HEALTH ADVOCACY BULLETIN Letter from the Director by cqe15118


									                              HEALTH ADVOCACY BULLETIN                                                           HEALTH ADVOCACY BULLETIN

                                                         Address Service Requested
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                                                                                     Health Advocacy Program
                                                                                                                               The Journal of the Health Advocacy Program at Sarah Lawrence College
                                                                                                                 VOLUME 16, NUMBER 1                                                                                                                                      SPRING 2009

                                                                                                                 Letter from the Director
                                                                                                                 By Laura Weil                                                   yet we consistently measure far below                       navigating our fragmented and discon-
                                                                                                                                                                                 most of them in the health of our citi-                     tinuous health care system. They need

                                                                                                                    t’s with great pleasure and humility                         zens. Measure after measure of clinical                     access to good and consistent primary
                                                                                                                    that I’ve agreed to continue my work                         outcomes in the U.S. is poorer than in                      care that keeps them out of emergency
                                                                                                                    on behalf of the Health Advocacy                             other developed countries. The Institute                    rooms. They need help fighting denials
                                                                                                                 Program. It’s an exciting and challeng-                         of Medicine’s To Err Is Human and simi-                     of care by our for-profit payer system.
                                                                                                                 ing time to be here. I’m indebted to the                        lar reports outline our system’s frighten-                  They need someone who can help them
                                                                                                                 College, the faculty, alumnae/i, students                       ing failure to protect us from being                        access information, identify clinical cen-
                                                                                                                 and organizational partners in the field                        harmed by medical error. We need to                         ters of excellence, and manage the com-
                                                                                                                 for their generous support of the                               achieve substantial changes to make the                     plicated and often cryptic minutiae of
                                                                                                                 Program – and for giving me an ongo-                            U.S. health care system compare posi-                       medical bills and insurers’ explanations
                                                                                                                 ing opportunity to contribute to the                            tively with that of other nations. If we                    of benefit. They need someone to talk

                                                                                                                 growth of our profession.                                                                                                   to, someone knowledgeable who can be
                                                                                                                    January’s U.S. News and World Report                                                                                     a consistently available contact and
                                                                                                                 cites Patient Advocate as a “cutting-                           “... our health care                                        support as they plot an often frighten-
                                                                                                                 edge career” for 2009. I’ve spent the                                                                                       ing course through diagnosis, treatment
                                                                                                                 past 20 years as a patient advocate —                           system’s catastrophic                                       and recovery.
                                                                                                                 and just as long trying to explain what                                                                                       Patient advocates step in to provide
                                                                                                                 “health advocacy” means to polite but                           shortcomings have finally                                   such support. Sadly, support rarely
                                                                                                                 mystified people — so I find their pre-                                                                                     comes these days from family physi-
                                                                                                                 diction to be an astounding develop-                            reached the tipping point                                   cians. Their ability to spend time with
                                                                                                                 ment. It’s a clear indication that our                                                                                      patients is compromised by unrealistic
                                                                                                                 health care system’s catastrophic short-                        in public awareness.”                                       insurance reimbursements and the
                                                                                                                 comings have finally reached the tip-                                                                                       resulting need to see more patients in
                                                                                                                 ping point in public awareness.                                                                                             less time in order to underwrite the high
                                                                                                                                                                                 don’t, we’ll continue to be shamed and                      costs of practicing medicine. Add to that
                                                                                                                    Any objective observer of America’s                          harmed by crushingly disproportionate
                                                                                                                 dysfunctional health care system must                                                                                       our increasing reliance on complex med-
                                                                                                                                                                                 percentages of GDP spent on embarrass-                      ical technology, clinical micro-special-
                                                                                                                 hope that the new administration’s                              ingly poor clinical outcomes.
                                                                                                                 agenda will try to make it more rational.                                                                                   ization, and the transfer of patient care
                                                                                                                 Our system isn’t meeting our emotional,                           But our failures by themselves aren’t                     away from the primary care physician to
                                                                                                                 financial or clinical needs. The United                         why U.S. News has identified Patient                        unknown and often geographically
                                                                                                                 States spends more per capita for health                        Advocacy as a growth industry. Sick                         remote specialists, and it’s no wonder
                                                                                                                 care than any other developed country,                          and often frightened people need help                       that U.S. News expects the demand for
                                                                                                                                                                                                                                             Patient Advocate services to surge.
                                                                                                                                                                                                                                               On some level, I’m sure we’d all love
                                                                                                                   In This Issue                                                                                                             to see our profession’s “cutting-edge”
                                                                                                                                                                                                                                             designation disappear, provided it did
                                                                                                                   Letter from the Director ........................................................................................1        so because we had a rational system
                                                                                                                   Letter from the Editor............................................................................................2       able to meet the needs of people seek-
                                                                                                                   Faculty Profile: Mary Ann Baily...........................................................................2               ing medical care, to keep people
                                                                                                                   Letter from the Dean of Graduate Studies .........................................................3                       healthy and able to be contributing
                                                                                                                   Notes from the Field ..............................................................................................4      members of society, and which didn’t
                                                                                                                     Bridging the Information Gap ..........................................................................4                impoverish patients — sometimes even
                                                                                                                     Advocating for Changes in Long-Term Care..................................................5                             those who have health insurance — or
                                                                                                                     Providing Preventive Care for the Uninsured................................................6                            squander our nation’s coffers by spend-
                                                                                                                     Advocacy from a Genetics Perspective ...........................................................7                       ing for medical interventions that don’t
                                                                                                                   Student Internship: Ethics in Health Care at the VA ........................................8                             work while denying access to basic
                                                                                                                                                                                                                                             primary care.
                                                                                                                   Student Paper: The Death of Self.........................................................................9
                                                                                                                   Holiday Party........................................................................................................10     Until these changes come to pass,
                                                                                                                   Upcoming Meetings and Conferences ..............................................................11                        U.S. News and I believe that demand
                                                                                                                                                                                                                                             for our services will keep growing.
Letter from the Editor                                                                                                                      Letter from the Dean of Graduate Studies
By Barbara Robb                                    city hospital in Toronto. Karlin Mbah is       organization that hopes to use genetics   By Susan Guma                                       • Mentoring by HAP faculty focused           career    advancement        while
                                                   a helpline counselor at a nonprofit            to transform health care. At both the                                                           on academic advising and career            enabling current students to devel-

A                                                                                                                                           I
        s Laura Weil writes in her                 organization that focuses on issues            personal and policy level, Health            am pleased to announce to readers of               advice.                                    op future career goals. Coming
        Letter from the Interim                    relating to aging and long-term care.          Advocacy graduates are working to            the Health Advocacy Bulletin that                • Capstone project is required of stu-       soon: a web-based, keyword-
        Director, sick and frightened                HAP graduates are also working on            improve health care.                         Laura Weil has been appointed                      dents entering the program in Fall         searchable database of current
people need help navigating our frag-              changing our health care policy.                 Current students in the Program are     Director of the Health Advocacy                       2008 and later. The capstone func-         health advocacy employment
mented health care system. Providing               Karlin’s job has a second dimension —          also involved at both personal and        Program, effective March 2009. Below is               tions to integrate coursework and          opportunities.
that help is exactly what many gradu-              she is a policy advocate working for           policy levels. Valerie McDermott’s        the announcement made to the Sarah                    field experience in a substantial        • The Health Advocacy Bulletin now
ates of the Health Advocacy Program                long-term care reform. Liz Hamlin              paper illustrates the personal issues     Lawrence community by President                       culminating project, demonstrate           focuses on alumnae/i achievements
are doing. Catherine Marcial coordi-               works as a legislative assistant to            involved in health care, while            Karen Lawrence.                                       students’ expertise in a chosen area       and careers to highlight concrete
nates a program in New Jersey that                 Richard Gottfried, the Chair of                Stephanie Krieg’s description of her         I am pleased to announce that Laura Weil           of specialization, and connect stu-        examples of the broad opportunities
offers free cancer screenings to the               the Committee on Health in the New             internship in Ethics at the Veterans      (HAP ‘94) has been appointed as the                   dents with specific professional           that exist in the field.
uninsured. Farrah Schwartz is a                    York     State    Assembly.    Amelia          Health Administration focuses on pol-     Director of the Health Advocacy program.              opportunities.
patient education specialist at an inner-                                                                                                                                                                                                  The Program has had healthy
                                                   Chappelle is at Genetic Alliance, an           icy changes.                              As the interim director since September             • Advocacy specialization in a sub-      recruitment and retention of students
                                                                                                                                            2007, Laura has demonstrated impressive               stantive area (e.g., child health;     through the efforts of many people,
                                                                                                                                            leadership in guiding the Program through             older adults; mental health) is        including Emanuel Lomax, our
                                                                                                                                            strategic initiatives over the past months.           required by the end of the first       Graduate      Studies      Director  of
                                                                                                                                            Her career prior to the directorship involved         year. Subsequent research and          Recruitment       and       Admissions.
                                                   Faculty Profile: Mary Ann Baily                                                          hospital advocacy in major medical centers            fieldwork assignments — including      Supported in its work by the Health
                                                                                                                                            in New York City and leadership in the                capstone — are tailored to further     Advocacy Advisory Board’s report to
                               Mary Ann Baily will be teaching the Economics of Health course in the Health Advocacy                        Society for Healthcare Consumer Advocacy.             develop specific expertise, enhanc-    President Lawrence and Dean Watts
                               Program starting in January 2009. She has a doctoral degree in economics from MIT and is                     She serves as a grants reviewer for the               ing ability of students to demon-      (see Health Advocacy Bulletin, Winter
                               currently a research scholar in ethics and health policy at The Hastings Center, a bioethics                 National Institute of Mental Health, and on           strate a proven track record of        2008), the Program will continue to
                               research institute in Garrison, New York. She has many years of experience teaching health                   the Institutional Review Board of Beth                achievement in the field.              strengthen its role in the community at
                               economics to undergraduate and graduate students in economics, public policy and public                      Israel Medical Center. Laura has been on the                                                 large and work in collaboration with
                                                                                                                                            Sarah Lawrence faculty since 1999. She              • Writing support is given through
                               health at Yale University (1973-79) and George Washington University (1983-99).                                                                                                                           our many partners.
                                                                                                                                            brings to the HAP a keen understanding of             the biweekly “HAP Writing
                          In addition to her work at the Hastings Center, her non-academic experience includes mem-                         the health field and its challenges, and it is        Group” workshop led by a HAP
                          bership on an Institute of Medicine Committee on increasing rates of organ donation (2005-06)                     clear that her voice and that of the program          faculty member, where students
                          and service as the staff economist for a presidential commission on ethical problems in medi-                     will be heard in the national debate on               can obtain support with general
       Mary Ann Baily     cine and biomedical and behavioral research (1980-1983). Over the past twenty-five years,                                                                               writing issues or guidance with
                                                                                                                                            health care issues.
                          she has carried out research and consulting projects on genetic screening; health care                                                                                  specific assignments.
   access, rationing and quality improvement; organ transplantation; end-of-life care; and the implications of HIV infec-                      In this time of fiscal crisis for the country,
                                                                                                                                            the efforts of the Health Advocacy program,         • Fieldwork coordination is provid-
   tion, organ transplantation and Alzheimer’s Disease for health care financing.                                                                                                                 ed by a faculty member who works
                                                                                                                                            its faculty and alumnae/i become even more
   She is convinced that a working knowledge of basic economic concepts is a valuable asset for health advocates.                           critical to all of us. Laura will provide steady      closely with students, meeting with
   In the past, she has thoroughly enjoyed teaching economics to students preparing for careers in public health and                        leadership for the challenges ahead with her          them regularly to supervise
   public policy, especially students who have had little previous experience with economics. She believes that the                         expertise and passion for advocacy.                   progress in the practice component
   Sarah Lawrence program in health advocacy is an exciting educational innovation, and she is looking forward to                                                                                 of the program. The Fieldwork
                                                                                                                                              We wish her well on her appointment.                Seminar is structured to support the
   working with its students and faculty.
                                                                                                                                               As the remarks by President                        development of a professional
                                                                                                                                            Lawrence indicate, the Health                         advocacy identity.
                                                                                                                                            Advocacy Program has been thriving                  • A Spanish language group meets
                                                                                                                                            under the leadership of Laura Weil and                weekly and fosters facility with
                                                                                                                                            HAP’s excellent and committed faculty.                medical and health care terminolo-
                                                                                                       Together they have worked on                          gy for students and alumnae/i with
                                                                                                                                            strengthening the curriculum and on                   existing Spanish language skills.
   The HEALTH ADVOCACY BULLETIN is a publication of the Health Advocacy                                                                     developing several important initia-
                                                                                                                                            tives. True to the mission of the college,          • Professional opportunities/Career
   Program at Sarah Lawrence College, One Mead Way, Bronxville, NY 10708.
                                                                                                                                            the Health Advocacy Program has                       development are emphasized.
   Interim program director: Laura Weil                                                                                                     focused on how to nurture the individ-                Regular bi-weekly email health
   Editor: Barbara Robb                                                                                                                     ual voices of its students and how to                 advocacy employment opportuni-
   Email: or                                                                                enhance the professional experiences                  ties are provided to alumnae/i,
   All material in the HEALTH ADVOCACY BULLETIN is the property of the authors and may not                                                  which are so much a part of our educa-                faculty and current students. The
   be reprinted without written permission. Opinions expressed are not necessarily those of the                                             tion. Among the HAP’s many new ini-                   goal is to provide alumnae/i with
   editor or of the Health Advocacy Program.                                                                                                tiatives are the following:                           opportunities for employment and

                                                                           2                                                                                                                                     3
                                       Notes from the Field                                                                                                 Advocating for Changes in Long-Term Care
                                Bridging the Information Gap                                                                                By Karlin Mbah                                 The second main component is influ-      York City and Long Island. A Family
                                                                                                                                                                                        encing policy. FRIA promotes patient        Council is a group of friends and rela-
                                                                                                                                                                                        centered changes in rules and regula-       tives of nursing home residents.

By Farrah Schwartz                               A large focus of my work is health lit-         After the HAP I went straight into a             ong-term care is not a topic most
                                              eracy. Health literacy is defined as the         postgraduate internship with the                   Americans consider in advance.        tions at the individual nursing home        Councils work to support each other as

         s health advocates, it is impor-     degree to which a person has the capac-          Cancer Quality Council of Ontario at               Not many people want to have a        level and strengthens the multifaceted      caregivers and to improve nursing
         tant to ask ourselves whether        ity to get, process and understand basic         Cancer Care Ontario, where I contin-         conversation about where they will go       long-term care system though legisla-       home services and conditions. In my
         we are effectively communicat-       health information and services needed           ued after completing the internship.         and who will care for them when they        tive action at all levels of govenment.     first role as Family Council Coordinator,
ing with our clients. How does the            to make appropriate health decisions.            CCO is responsible for planning and          are old and frail and may be experienc-     FRIA also provides education by host-       I brought together family advocates and
language we use impact the clarity of         Barriers to health literacy include gener-       oversight of all cancer services in the      ing cognitive difficulties. Yet as the      ing conferences, providing guest            representatives of nursing home staff to
our messages? In health care, medical         al literacy limitations, medical and tech-       province. I spent two years at CCO in        Baby Boomers enter their retirement         speakers for college courses and dis-       begin collaborative work to improve
terminology and jargon all too often          nical language, the complexity of health         two different positions, but did not feel    years, the topic of long-term care is       seminating public alerts on changes in      staff training with the goal of higher
get in the way of clarity. In many cases,     information, cultural barriers and phys-         I had an impact on the patient experi-       receiving more and more attention. I        eldercare law.                              quality resident care. Secondly, I educate
our jobs as advocates center around           ical challenges associated with illness,         ence. I was focusing instead on techni-      have volunteered with older Americans                                                   both legislators and the public on policy
bridging the information disconnect           such as fatigue and pain. At an inner-           cal and clinical solutions to waiting        in some capacity since the age of 3, but                                                changes. My work with legislators
between providers, systems and                city hospital with many elder and immi-          times, clinical quality issues and           never imagined it would become my           “... when it comes to                       involves lobbying, giving testimony and
patients. In my role as the Patient           grant patients, both health literacy and         provider-centred initiatives. It was at      career until entering the Health                                                        organizing letter writing or call-in cam-
Education Specialist for an inner-city        general literacy are challenges to care.         this point that I first came across          Advocay Program.                            health, the personal IS                     paigns to shape elderlaw for the benefit
tertiary hospital in Toronto, I help the        As is often the case in these positions,       patient education, through a growing                                                                                                 of the individual. Recently, I spoke at the
                                                                                                                                               I came to Sarah Lawrence expecting to
hospital and its staff understand and         patient education is supported in princi-        initiative at the provincial level to pro-   grow my knowledge as an established         political and the political                 NYC Department for the Aging Annual
address the challenges inherent in            ple but remains under-resourced.                 mote cancer patient education.                                                                                                       Plan Hearing asking the City govern-
                                                                                                                                            professional patient representative. But
health care communications.                   Recently, we engaged in a strategic plan-          After working at CCO, I took a job         after three eye-opening internships, two    IS personal.”                               ment to avoid direct service cuts to pro-
  St. Michael’s Hospital is a tertiary care   ning process that included an all-day            with the Ministry of Health and Long-        in women’s health policy and research                                                   grams for the elderly in the midst of the
center with 535 inpatient beds, over 5000     workshop with key hospital stakehold-            Term Care, working with the primary          and one in a government Area Agency                                                     budget crisis.
staff and 25,000 day surgeries a year. I      ers and the development of a written             care renewal team as a Policy Analyst.       on Aging, I realized I wanted to affect        At FRIA I am both a helpline coun-          For the public, I post the Citizen’s
work in the department of Risk                plan. Stemming from that process, I am           Again, despite my dedication to pri-         patient-centered changes to health care     selor and the Policy Advocate. As a         Action Page on the FRIA website. The
Management           and           Quality    working to get approval for a Patient            mary care and my strong belief that in       on a broader spectrum than just one         helpline counselor, I typically speak       page provides information on current
Improvement. The Patient Education            and Family Library, information man-             the Canadian system, primary care is         clinic at a time. Yet Sarah Lawrence also   with friends and family members of          legislation in long-term care and offers
Program was created as a response to a        agement systems to share work being              one of the key opportunities for advo-       inspired me to continue helping individ-    older Americans who are facing a crisis     citizens a variety of ways to advocate for
recommendation from Accreditation             done across the hospital and increased           cacy, I felt very far removed from the       uals make their voices heard in an          in their health. My job is to provide       change, from speaking up at proposed
Canada (the Canadian rough equivalent         human resources. In tight times, it is           patient experience. I struggled with         increasingly challenging health care sys-   callers with several options that could     rule-making hearings to marching on
to the Joint Commission). The recom-          very hard to get increased resources.            questions about how to fit into a healt h    tem. An unexpected layoff from my job       be appropriate for their older relative’s   Albany with coalitions for the aging.
mendation centered around the need for                                                         care environment that does not have          in women’s health, and a crisis in my       care, then guide the caller in navigation   Through this page and the helpline, I
improved patient education, and I was                                                          the same opportunity for advocacy as         own grandmother’s health, spurred me        of, and self advocacy in, the long-term     also find and groom individuals to
hired to lead the way in April 2006.          “At an inner-city hospital...                    in the U.S.                                  to explore the new career aspirations I     care system. For example, a grand-          become advocates for FRIA’s goals and
   I am responsible for developing and                                                            When I came across the job here at St.    had gained through the HAP.                 daughter might call about her grandfa-      mission at all levels of government. I
implementing a corporate strategy for         both health literacy and                         Michael’s Hospital, I knew it was a great       FRIA: the Voice and Resources for        ther who appears overmedicated each         recently provided tools for concerned
patient education at the hospital. The                                                         fit. The job provides an opportunity to      Eldercare with Dignity is a 30-year-old     time she visits him in the nursing home.    citizens to speak out against the pro-
first job when I arrived was to identify      general literacy are                             effect change at a hospital level in a       New York City nonprofit that works for      The granddaughter believes her grand-       posed New York State rule for neurobe-
a framework for patient education —                                                            meaningful way for patients. I enjoy         long-term care reform on both micro         father has stopped eating and experi-       havioral step down units in nursing
how it rolls out across the hospital and      challenges to care.”                             many aspects of my job, including the        and macro levels. There are two main        enced a dangerous fall due to the over-     homes. The step down units were pro-
who is accountable for what. This                                                              opportunity to see attitudes change and      components to the organization. The         medication. This caller would be guided     posed to provide greater independence
includes     a    Patient    Education          Before I came to the hospital, I spent         understanding grow about the need to         first is a helpline which takes an aver-    in nursing home regulations on chemi-       for people with cognitive behavioral dif-
Committee that I chair, as well as ties       quite a bit of time trying to figure out         communicate clearly and in plain lan-        age of 2000 calls per year. Helpline        cal restraint, nutrition and maintaining    ficulties resulting from traumatic brain
in to the 8 clinical programs, profes-        where I fit into the system. After I gradu-      guage with our patients. I have had the      counselors:                                 residents at their highest possible level   injury. Many of these individuals no
sional practice and nursing. I also           ated from the HAP in 2003, I returned            opportunity to use many management                                                       of functioning. She would also be given     longer needed extensive medical and
                                                                                                                                              • guide friends and family members        tips and options on how to conduct a        psychological care, but were not yet
worked with the Committee to devel-           home to Toronto and tried to find the            tools and develop and implement orga-            seeking to uphold residents’ rights;    constructive conversation with the nurs-    ready to return to the community. In
op standards and an approval process          answer to this question in a health care         nizational strategy. Though it took me a
for our patient education materials. I                                                                                                        • provide information on keeping          ing home on proper management of her        reality, the units are so poorly defined
                                              system that was very different than the          while to find my place as a health advo-
have worked with other patient educa-                                                                                                           seniors as independent as possible,     grandfather’s health needs.                 that nursing homes could warehouse
                                              one I studied in the U.S. Though we have         cate in the Canadian system, I feel that
tion managers in the province to do                                                                                                             both in the community and in               As Policy Advocate, I have a much        any person with cognitive behavioral
                                              hospital-based advocates, the model of           the HAP provided me with an impor-
research into what hospitals across                                                                                                             long-term care settings; and            broader role, working for change in leg-    probelms, gain from this warehousing
                                              patient rights is not as far along as it is in   tant lens for approaching this role that
the country are doing in patient educa-       New York State. Private advocates and            contributes to my success in change            • answer questions about Medicare,        islation at the city, state and federal     by billing Medicaid at a higher rate,
tion. We presented the results from           advocacy organizations are not as wide-          management at the hospital.                      Medicaid, health care proxies,          level. First, I organize and support the    reduce resident independence and not
our study at the American Academy             spread, and often focus on fundraising                                                            caregiver support and much more.        leaders of 34 Family Councils in New                         Continued on page 9
of     Family    Physicians     Practice                                                       Farrah Schwartz graduated from the
                                              rather than widespread advocacy.
Improvement Forum in December.                                                                 Health Advocacy Program in 2003.

                                                                    4                                                                                                                                      5
                Providing Preventive Care to the Uninsured                                                                                                   Advocacy from a Genetics Perspective
By Catherine Marcial                            The SAVE Women Program is a                sometimes a long time has gone by            By Amelia Chappelle                            Since joining Genetic Alliance I have     ment agencies, policy organizations,
                                             small-scale initiative to bring preven-       before they hear about our program                                                       learned it is a place of perpetual           health care providers, researchers and

S                                                                                                                                       D
      ince 2002, I have occupied the         tive care to a medically neglected popu-      and the disease has reached an                       uring my graduate career in the     motion, constant self-evaluation and         individuals. We offer technical assis-
      position of Coordinator for the        lation. As program coordinator, I must        advanced stage.                                      Health Advocacy Program at          creativity. Over a period of 22 years the    tance to organizations, build and sus-
      SAVE Women Program, or, offi-          frequently advise people about how to            I first heard of the SAVE Women                   Sarah Lawrence, I saw each          organization has evolved from an             tain robust information systems and
cially, the SAVE Women and Men               address various medical issues not            Program right after its establishment,       class, assignment and field placement       information hotline for questions            actively work toward public policies
Program. The purpose of the program          related to cancer, referring them to spe-     because I wanted to have a mammo-            from the perspective of a burgeoning        about rare genetic conditions to an          that promote the translation of basic
is to offer free cancer screenings to peo-   cialists or to a specific clinic, providing   gram but had no medical insurance. I         genetic counselor. For three years I        umbrella organization for disease-spe-       research into therapies and treatments.
ple who have no health insurance, and        them with contact names and numbers,          went to the hospital for examination         studied Human Genetics and Health           cific advocacy groups to an organiza-        In particular, Genetic Alliance identi-
who, according to an arbitrary calcula-      reassuring them about their fears,            and testing, because the program did         Advocacy, earning master’s degrees in       tion that works with all the players in      fies solutions to emerging problems
tion, are too poor to afford these tests     telling them how to access funds desig-       not yet have a van. I was favorably          both areas. The field components of         the genetics and health world. Genetic       and works to reduce obstacles to rap-
out of pocket. The program operates          nated for the medically indigent. Since       impressed by the doctor and nurse I          these programs enabled me to experi-        Alliance continues to expand and rein-       idly improving health technologies
out of the University of Medicine and        many of our participants have not seen        saw and the service I received.              ence the connections between the clini-     vent itself. Our current goal is to trans-   and services.
Dentistry of New Jersey (UMDNJ), in          a doctor in years, it can easily be imag-     Afterwards, I was surprised that so few      cal and the broader systems levels of       form health through genetics. As we            We use listservs, webinars and other
Newark, and receives funds from the          ined how many other health issues they        people knew about the program. I did         health and health care. I worked in the     learn more about human genetics our          tools to connect our contacts into a net-
National Breast and Cervical Cancer          may have on their minds when they             one of my Health Advocacy internships        genetics department of the March of         understanding of health changes, and         work with thousands of shared
Detection Program (NBCCDP) and the           come in for mammograms. It is as if this      there, and then began a part-time job        Dimes and in the genetics services sec-     the way in which we advocate and             resources, creative tools and new pro-
State of New Jersey’s Department of          free program is a small gesture towards       contacting program participants for fol-     tions of state health departments. The      support each other also adjusts. This        grams. We promote open access to infor-
Health and Senior Services. We also          a national health program, where              low-up testing and setting up appoint-       experiences I had in and out of the         constant fluctuation is mirrored in our      mation to support the translation of
have a substantial grant from the            everyone could get medical care with-         ments, helped by my knowledge of             classroom were transformative and           organizational commitment to open-           research into services and individualized
Komen fund, although we do not have          out fear of intolerable financial cost.       Spanish and Portuguese. Finally, due to      directed my postgraduate career.            ness — our transparent, candid, intel-       decision-making. In all we do, we inte-
direct control over how those funds                                                        personnel shifts, the coordinator posi-        When asked to write a paper on any        lectual interrogation of our processes,      grate individual, family and community
are spent.                                                                                 tion became available and I took over.       organization for the Health Care Policy     products and interactions with others.       perspectives to improve health systems.
   Services are available to undocu-         “Many calls come...from                       Although I don’t work under direct           class, I chose to write about Genetic       Openness helps us to learn from our
                                                                                                                                                                                                                                   As you may imagine, all this work
mented immigrants (who make up a                                                           supervision, I do have to contend with       Alliance, a nonprofit genetics advocacy     missteps, seek unheard perspectives
                                                                                                                                                                                                                                 takes a concerted effort from the
large proportion of participants), as        desperate women who                           two bosses: the hospital and the State,      organization. Writing the paper             and identify successes as we improve
                                                                                                                                                                                                                                 Board of Directors, staff, interns and
well as to medically sidelined U.S.                                                        both of which are very demanding             sparked my interest, and I had the          the health of individuals, families and
                                                                                                                                                                                                                                 outside partners. My daily work is a
citizens. For most of its twelve-year        know that something is                        agencies. For the State I have to play a     opportunity to learn more after I           communities.
                                                                                                                                                                                                                                 mixture of internal and external meet-
history, the program has used a mam-                                                       part that is not always comfortable for      applied for and received a scholarship                                                   ings, writing, project management,
mography van which allows people to          wrong, but have nowhere                       me. For both agencies I have to satisfy      from Genetic Alliance to travel to                                                       travel and many, many emails! I direct
be tested on their own home turf, so to                                                    innumerable bureaucratic require-            Washington, D.C. and attend Genetics        “Our current goal is                         and coordinate our resources and
speak. This makes the service accessi-       else to turn.”                                ments. In the hospital I must promote        Day on the Hill. In 2006, the Genetic                                                    services overall, while managing a
ble for those who want to be tested but                                                    the program among various entities           Information Nondiscrimination Act           to transform health                          five-year grant from the Centers for
do not want to navigate a hospital sys-                                                    that can be sometimes in conflict with       (GINA) had hope of passing, but con-                                                     Disease Control and Prevention, the
tem. It also provides relief to the            The people who use our services are         each other or unaware of what the oth-       tinued to meet legislative resistance.      through genetics.”                           Access to Credible Genetics Resources
already overburdened Breast Imaging          those whose expectations are low              ers are doing. In this respect, the hospi-   Genetic Alliance organized a day for                                                     Network project.
Center at UMDNJ.                             enough so that they are glad to take          tal reminds me of a jellyfish, which is      advocates from every aspect of the
                                                                                                                                        health care system (health care                                                            At Genetic Alliance, I enjoy the
  I can safely say that our uninsured        advantage of whatever health care             said to be not one animal, but many                                                        Openness has allowed us to bring
                                                                                                                                        providers, disease-specific advocates,                                                   excitement of learning new things and
participants receive the same grade of       opportunity comes their way. Many             smaller animals that have combined as                                                    together diverse stakeholders to create
                                                                                                                                        industry members, students, etc.) to                                                     the responsibility of applying prior
testing as paying patients, and proba-       other people who are eligible for the         a survival mechanism. By that analogy,                                                   novel advocacy partnerships. We do
                                                                                                                                        visit the offices of policymakers to                                                     knowledge. The Sarah Lawrence
bly better follow-up for abnormal            program do not come — they are the            UMDNJ is a pretty dysfunctional jelly-                                                   this by holding Summits and Salons on
                                                                                                                                        relay the importance of protecting                                                       Health Advocacy Program fostered
results. Since UMDNJ is the public           ones who feel cheated or betrayed by          fish. It is hard to promote the cause of a                                               timely topics in genetics and health,
                                                                                                                                        genetic information.                                                                     many valuable skills: critical thinking,
hospital in New Jersey, we are able —        the social system, or who have too            health care program for the poor in a                                                    often convening those unlikely to sit at
                                                                                                                                                                                                                                 self-direction and creative problem
or at least have been until now — to         many problems that they know about            place where everybody is watching his          This first taste of advocating on the     the table together in an open discussion
                                                                                                                                                                                                                                 solving. We are at an exciting time,
guarantee that anybody diagnosed             to go looking for other problems that         own back. There was a time when the          Hill gave me a profound feeling of con-     of health systems in need of change and
                                                                                                                                                                                                                                 when the future shows much promise
with cancer as a result of screening         can only be detected by x-rays or a           hospital was flush with charity care         nectedness to an important cause. And       the implications of improving those
                                                                                                                                                                                                                                 for greatly improving health systems.
tests provided through the SAVE              pathology lab. We do draw participants        funds and welcomed uninsured                 this first interaction with Genetic         systems. We travel to professional soci-
                                                                                                                                                                                                                                 Every Health Advocacy Program
Program will be followed and will            from the latter group, however, when          patients from the community, but with        Alliance left me wondering if the           ety meetings, regional genetics collabo-
                                                                                                                                                                                                                                 graduate is prepared to make a mark
receive a full course of the indicated       they are told, or can feel, that they have    the economic downturn, those days are        unique, energetic, forward-thinking         rative meetings and content-specific
                                                                                                                                                                                                                                 on the health of individuals, irrespec-
treatment, despite inability to pay. If      a palpable lump in the breast. Many           gone. But I, and the rest of the staff       organization might be a professional fit.   meetings (such as meetings on new-
                                                                                                                                                                                                                                 tive of the specific route taken. See you
the participant is a U.S. citizen or legal   calls come to the office from desperate       here, soldier on, feeling that many          Directly after graduation, I accepted the   born screening or family health history)
                                                                                                                                                                                                                                 in the field!
resident, NBCCDP also offers guaran-         women who know that something is              women depend upon us.                        position of Assistant Diretor of Genetics   to exchange ideas and resources.
teed expedited enrollment in Medicaid        wrong, and have nowhere else to turn.                                                      Resources and Services with Genetic           Genetic Alliance’s network includes        Amelia Chappelle graduated from the
                                                                                           Catherine Marcial graduated from the
for anyone diagnosed with breast or          We get these women in for examination                                                      Alliance and made the move from New         disease-specific advocacy organiza-          Health Advocacy and Human Genetics
                                                                                           Health Advocacy Program in 2000.
cervical cancer                              as quickly as possible; unfortunately                                                      York City to Washington, D.C.               tions, universities, companies, govern-      Programs in 2007.

                                                                 6                                                                                                                                      7
                        Ethics in Health Care at the VA:                                                                                                                           Student Paper:
                               Student Internship                                                                                                                                 The Death of Self
By Stephanie Krieg                           ities. If a consult came through, we        His communication with patients and          By Valerie McDermott                        cery store, she always had a smile and a      one of the side effects of pancreatic can-
                                             were able to be a part of the discussion.   their families helped to clarify the                                                     kind word and could make a conversa-          cer was hearing loss? Did she honestly

L                                                                                                                                     I
       ast summer I had the chance to        We learned as much about the dynam-         goals for the patients’ care, even              n the last six months of my mother’s     tion out of your outfit, the two items in     believe that my mother’s fabulous sense
       intern at the Veterans Health         ics of this busy team as we did about       though they were uncomfortable con-             life, I always knew where I would        your basket or the thing you mentioned        of style and care for her appearance had
       Administration in their National      the ethics consultation process.            versations to have. They were neces-            find her in her house. She would be      the last time she saw you. It wasn’t that     been eradicated, although the cancer
Center for Ethics in Health Care. The        Everyone brought their own unique           sary so everyone was on the same             on her side of the bed, a long thin bump    she liked to talk, in fact she hated the      had not? My mother moaned as if she
center has three offices, located in         perspective to the table and it was         page while the patients were still able      under many blankets. Her glasses            phone, but she liked people, and she          felt another bit of her self torn away.
Washington, D.C., New York and               important to hear those different view-     to speak on their own behalf.                would be lying beside her, atop the New     was good with them. She was social in a         My mother lost her footing that day
Seattle. I was involved in the New York      points. These issues are not black and        Given how central ethics is in             York Times crossword puzzle. More           sincere way. A chronic list maker, she        her friend came to visit. She recognized
office, which focuses on ethics consul-      white, but often exist in the space         health care, I am certain I will take        often than not, the puzzle would be         reveled in completing the tasks of the        that her accomplishments and achieve-
tation. For ten weeks each summer            somewhere in between the two.               the ideas explored in this internship        blank. The rhythm of the puzzles, the       day and crossing them off her list. My        ments, and the perspective that others
they employ several interns and essen-       Discussing them and researching the         with me into my future career.               clever themes, would all but escape her     mother’s illness took away that smart,        held of her, were reduced to the sum
tially give them a chance to be a part of    variety of concerns that came through       Moreover, the importance of this area        now — the words taken in to the brain       organized, “call Dee when you’re in the       total of someone dying. Oh, she knew
their program. In retrospect, this           helped them to reach a well-formulat-       is even more apparent to me now.             and then lost in the opiate fog. Gone       foxhole” identity. It took that away and      she was still a mother, a wife, a sister, a
opportunity expanded my under-               ed recommendation, which the facility       Ethics is not just a topic for philo-        were the days when she would rise at        left nothing in return. Unable to do any      niece, but the New York career woman,
standing of how fundamental ethical          would hopefully find helpful.               sophical conversations; it is some-          7:00 am and quietly bring in the paper      of the things that she used to do, hers       the femme fatale with the great legs, the
issues are in health care every day. It is                                               thing that impacts real people, in at        from the drive. Armed with coffee, cig-     became a life identified by four-hour         crackerjack puzzle solver were a thing of
one thing to believe this is an impor-                                                   times heartbreaking and difficult sit-       arettes and her worn dictionary, the        increments, the chutes and ladders of         the past. Her identity now was the last
tant area, but quite another to witness      “I could really see how                     uations. If the VA is able to improve        spine nearly broken in half, she would      pain management, at which time she            twenty-four hours and the next twenty-
its importance. I have been interested                                                   the ethics quality at their facilities to    tackle the puzzle, unrelenting until it     would take massive amounts of pain            four. She was pigeonholed, boxed,
in medical ethics ever since I majored       an understanding and a                      better meet the needs of patients and        was done. Sometimes she would be            pills and then slowly go into that numb,      labeled and dismissed.
in philosophy as an undergraduate.                                                       staff alike, I think more facilities may     stymied by the Sunday theme, and she        film-covered place. I often wondered
Subsequently, I was looking forward to                                                                                                would wait for me to arrive, to help her                                                     Identity can be a tricky thing. My
finally seeing how integral ethics is in
                                             dedication to ethics came                   use a similar model in the future. The
                                                                                                                                      crack the code. Together we would pore
                                                                                                                                                                                  what it was like there, in that foggy
                                                                                                                                                                                                                                mother hated being recognized as a suf-
                                                                                         VA is already an acknowledged                                                            place, and I would sometimes take out
the “real world,” as opposed to its role                                                                                              over the puzzle, each with a pen and a                                                    ferer of something, based strictly on her
in more abstract discussions in the phi-
                                             through in patient care.”                   leader in health care quality and I am
                                                                                                                                      cigarette; forcing each other to think
                                                                                                                                                                                  my contact lenses and lie on the bed
                                                                                                                                                                                                                                appearance. And yet, she didn’t mind
                                                                                         looking forward to seeing how this                                                       with her. Together then, in the shadows,
losophy classroom.                                                                                                                    harder and be more clever than we                                                         turning heads at a young age based on
                                                                                         new approach to ethics will impact                                                       trying to make sense of the world
                                                                                                                                      could ever be alone.                                                                      the same thing. The trouble with a termi-
   This was a particularly exciting time       In addition to thinking through           the health care world.                                                                   around us.
                                                                                                                                                                                                                                nal illness such as my mother had is that
to be in the ethics center because they      issues such as informed consent, deci-                                                     My mother was known for her cross-           One day a particular friend of my          there is no way to overcome the disease,
had recently rolled out their new                                                        Stephanie Krieg is a student in the Health   word puzzle skills, and she enjoyed that
                                             sion-making capacity, the disclosure                                                                                                 mother’s stopped by — the one and             or to reclaim a bit of your former self. It
approach to ethics in health care. This                                                  Advocacy Program.                            notoriety. She was a smart woman, but
                                             of adverse events and the like, this                                                                                                 only time. My mother was in her famil-        is a constant erosion of identity until the
new initiative, called IntegratedEthics,     experience allowed me to really see                                                      not in a bookish way. She couldn’t quote    iar place in bed, her eyes closed, and her    death tide just washes it all away.
emphasizes the importance of incorpo-        the ethics consultation process in                                                       Browning or Hemingway, and she              friend peeked in the room. She wheeled
rating ethical practices into the culture    action. I was able to sit in on the week-                                                didn’t care what the Dow did, but she       around and in a loud voice said, “Oh my       Valerie McDermott is a student in the
of the organization. This approach is        ly ethics consultation meetings at the                                                   could remember all of your teachers’        God, she looks terrible, it can’t be much     Health Advocacy Program. This paper was
designed to improve ethics quality by        VA. I also went along on patient visits                                                  names, your friends’ names and their        longer, can it? You’ll call me?” I was hor-   written for Sayantani Das Gupta’s Illness
opening up the scope of ethics to more       and saw how the interdisciplinary                                                        dolls’ names. If she saw you in the gro-    ror struck. Did this woman think that         Narratives class.
then just the ethics consultation serv-      team exchanged ideas to reach a rec-
ice. In fact, one of the modules used in     ommendation on the specific case. As
the rollout of this new initiative dis-
cusses ethical leadership, recognizing
                                             interns, we were lucky enough to be
                                             able to sit in on the monthly ethics
                                                                                                                                      Advocating for Changes in Long-Term Care
how influential the leaders of the           consultation meetings at Bellevue and
organization can be in communicating                                                                                                  Continued from page 5                       political levels. It was Sarah Lawrence       plan ahead for positive aging, to meet
                                             NYU, so we could observe how these
the importance of ethics and in making                                                                                                                                            which brought to the fore my aware-           the range of needs within an ever
                                             ethics consultation committees func-
it a priority.                                                                                                                        be held to additional oversight or safety   ness that, when it comes to health, the       increasing elderly population.
                                             tioned. It was helpful to get such a
                                                                                                                                      measures for the new wards. More            personal IS political and the political IS
  Throughout my stint with the ethics        broad sense of different ethics com-                                                                                                                                               Karlin Mbah graduated from the Health
                                                                                                                                      on this topic will be coming soon to        personal. We will all be affected by
center, my fellow intern and I were          mittees in the hospital setting.                                                                                                                                                   Advocacy Program in 2007. In addition to
                                                                                                                                      FRIA’s Citizen’s Action Page at             aging in some way, be it individually
treated as a part of the office. We joined     One of the highlights of this experi-                                                                                                                                            her work at FRIA, Karlin also does freelance
                                                                                                                                         or through our loved ones. We should
our department for their daily staff         ence was shadowing my supervisor                                                                                                                                                   grant writing for the US-Africa Children’s
                                                                                                                                      support/action/                             not have to face the challenges of
meeting and had the opportunity to           on his rounds in the ICU. This was                                                                                                                                                 Fellowship. She is a board member and
                                                                                                                                        FRIA provides me with the opportu-        growing older through the experience
discuss the different cases they were        where I could really see how an                                                                                                                                                    Clinic Liaison for the New York Abortion
                                                                                                                                      nity to facilitate postive changes in       of one crisis at a time. FRIA helps both
working on. Ultimately, our supervi-         understanding and a dedication to                                                                                                                                                  Access Fund on a volunteer basis.
                                                                                                                                      health care on both the personal and        the government and the individual
sors included us in many of their activ-     ethics came through in patient care.

                                                                8                                                                                                                                     9
                                    Holiday Party
                                                                                                                        Upcoming Meetings and Conferences
                                                                                                             Narrative Medicine Rounds,                                      April 6, 2009
                                                                                                             College of Physicians & Surgeons of                             Elizabeth Siegel Watkins will speak on “The Estrogen
The Health Advocacy Program hosted a                                                                         Columbia University                                             Elixir: Women, Hormone Replacement, and the
holiday party at Wrexham in December                                                                         Narrative Medicine Rounds are lectures or readings              Predicament of Aging.”
2008. Graduates of the Program were                                                                          presented by scholars, clinicians or writers engaged in
                                                                                                                                                                             May 7, 2009
invited, as well as current students and                                                                     work at the interface between narrative and health
                                                                                                                                                                             Charles Rosenberg will speak on “Who Owns Old
faculty. Joan Marks, who started the                                                                         care. Rounds are free and open to the public. They are
                                                                                                             held on the first Wednesday of each month from 5:00
Health Advocacy Program in 1980 and
                                                                                                             to 7:00 pm and are followed by a reception. Rounds
was director of the program until 1998,                                                                      are held at the Faculty Club, 446 P&S Building, 630             Faculty Seminar on Narrative Genetics,
was a special guest.                                                                                         West 168th Street (between Broadway and Fort                    The Institute for Social and Economic Research
                                                                                                             Washington Avenue), New York. Fore more information             and Policy (ISERP),
                                                                                                             see www.narrative                                               Columbia University
                                                                                                                                                      Narrative genetics is a new and interdisciplinary
                                                                                                                                                                             way to understand genetics in our lives, our culture
                                                                                                             April 1, 2009                                                   and our politics. The seminars, like all ISERP semi-
                                                                                                             Julie Salamon will read from Hospital: Man, Woman,              nars, are free and open to the public. The seminars
                                                               HAP alumnae and
                                                                                                             Birth, Death, Infinity, Plus Red Tape, Bad Behavior,            are held from 5:30 to 7:30 pm in Conference Room
                                                                                students with Rach           Money, God and Diversity on Steroids.                           801 of the International Affairs Building, West 118th
                                                               HAP faculty and                    el Grob,
                                                                               Associate Dean
                                                                                                                                                                             Street and Amsterdam Avenue, New York.
                                                                                                             May 6, 2009
                                                                                                                                                                             For more information see:
                                                                                                             Priscilla Wald will read from Contagious: Cultures,
                                                                                                             Carriers and the Outbreak Narrative.
                                                                                                                                                                             April 2, 2009
                                                                                                             June 3, 2009
                                                                                                                                                                             Alice Wexler will speak on “Narratives of Inheritance:
                                                                                                             Oliver Sacks will read from Musicophilia: Tales of Music
                                                                                                                                                                             Comparing Huntington’s Narratives Across Cultures,
                                                                                                             and the Brain.
                                                                                                                                                                             Continents and Centuries.”
                                                                                                             Changing Perspectives on Healthy Aging,                         May 7, 2009
                                                                                                             The New York Academy of Medicine                                Priscilla Walk will speak on “Clones, Chimeras, and
                                                                                                             The NYAM’s Section on the History of Medicine and               Other Creatures of the Biotech Revolution: Towards a
                                                                                                             Public Health presents talks examining some of the              Genomic Mythology.”
                                                                                                             profound ways in which basic expectations about aging
                                                                                                                                                                             Intensive Bioethics Course,
                     HAP students                                                                            and the aged have shifted in the last century. The talks
     Joan Marks with                                                                                                                                                         Kennedy Institute of Ethics
                                                                                                             are free and are open to the public. There is a recep-
                                                                                                                                                                             An intensive course in bioethics, Bioethics: Beyond the
                                                                                                             tion from 5:30 to 6:00 pm, followed by the lecture from
                                                                                                                                                                             Sound Bite, will be offered at Georgetown University’s
                                                                                                             6:00 to 7:00 pm. Talks are held at the New York
                                                                                                                                                                             Kennedy Institute of Ethics. For more information, see
                                                                                                             Academy of Medicine, 1216 Fifth Avenue at 103rd
                                                                                                             Street, New York. For more information and registra-
                                                                                                             tion see                                  June 1-5, 2009

                                           Julie Buyo
                                                     n and Yvo
                                                              nne Bokho
                                                                       ur, HAP al

                                                                                                                                                      Save the Date
                                                                                                                                                           Friday June 19, 2009
                                                                                                                                                     Professional Development Seminar
                                                                                                                                         “Program Development: From Idea to Implementation”
                                                                                                                              This interactive workshop, designed for the entire Health Advocacy community,
                                                                                                                                      will build skills and provide tools for implementing new programs
                                                                                                                                                       and re-conceptualizing existing ones.

                                                  10                                                                                                                    11

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