SSA source explains…

							Changes in HIV Listings

HIV Case Mangers
            Portland
         April 14, 2009
 Sarah Patterson, Attorney at Law

 sarah@sarahpattersonlaw.com
14.00 Immune System Disorders



 Changes effective June 16, 2008
New Listing, Online


 http://www.ssa.gov/disability/profes
 sionals/bluebook/AdultListings.htm
Side by Side Comparison Chart

I have posted access to SSA’s
 side-by-side comparison chart to
 the old Listing on the changes in
 14.08. It’s 47 pages long, very
 clear, on
 www.nosscr.org/news.html for
 your permanent reference.
New Immune Systems Regs

   SSA published final immune system listings
    that became effective on June 16, 2008. 73
    FR 14570. They made very few changes to
    the HIV listing itself, and the changes made
    weren’t very substantive. They were mostly
    things like removing “reference listings”: HIV
    listings that are met by meeting other listings.
Meeting the Listing


   The cases that come to hearing do not have
    objective documentation of an opportunistic
    infection. There may be credibility problems
    due to substance use, there may be
    compliance issues, there may be little
    documentation of severe side-effects (which
    is why keeping a journal can be so critical).
References to Other Listings Gone

 Thepoint is made twice in the
 Federal Register comments: a
 condition no longer has to MEET
 another listing to meet 14.08.
Or: Meets the Listing: Ignored!

   Often a Listing has been met at some point in
    time, but the claimant has recovered – e.g.
    has PCP 3 three times over 15 years.
   Build case around fatigue, manifestations,
    productivity, sustainability of work effort.
   ALJ’s and staff attorneys are not seeing as
    many AIDS cases any more – they need a lot
    of hand-holding.
The Problem:

   From an Advocate: “After ten years in
    widespread availability of HIV / AIDS
    medications in the US, the ALJs and Medical
    Experts are lulled into a false sense of 'it's
    cured.' If the disease is controlled by meds,
    then the claimant must be able to work,
    right?"
Equals Listing

   “If your impairment does not otherwise meet
    the requirements of a listing, we will consider
    your medical treatment in terms of its
    effectiveness in improving the signs,
    symptoms, and laboratory abnormalities of
    your specific immune system disorder or its
    manifestations, and in terms of any side
    effects that limit your functioning…”
Treatment: Side Effects, Response

   “When we evaluate your response to
    treatment and how your treatment may affect
    you, we consider such factors as disease
    activity before treatment, requirements for
    changes in therapeutic regimens … we must
    consider the effects of your treatment on an
    individual basis, including the effects of your
    treatment on your ability to function.”
Fatigue

   If you need long naps daily, you are not
    available for competitive employment.
   Underreported in medical records. Need
    letter from doctor, one of my forms, contact
    me.
   Get doctor to say how many days a month of
    work would be missed because of symptoms.
    Over 4 = a win. Sustained and predictable
    availability is key.
Treatment/Credibility

   “…when we assess the credibility of your
    complaints about your symptoms and their
    functional effects, we will not draw any
    inferences from the fact that you do not
    receive treatment or that you are not
    following treatment without considering all of
    the relevant evidence in your case record,
    including any explanations you provide that
    may explain why you are not receiving or
    following treatment.”
Medications

   “Some medications may have acute or
    long-term side effects. …we consider the
    effects of corticosteroids or other treatments
    for autoimmune disorders on your ability to
    function, … medications used in the
    treatment of autoimmune disorders may also
    have effects on mental functioning…”
Chronic Med Side Effects

   “We will also consider whether you have
    chronic side effects from these or other
    medications, including severe fatigue, fever,
    headaches, high blood pressure, joint
    swelling, muscle aches, nausea, shortness of
    breath, or limitations in mental function
    including cognition (for example, memory),
    concentration, and mood.”
Arguments for ALJ

 Firstargue that a condition does
  not any longer have to meet
  another listing – e.g. Neurological
  or Organic Brain Damage listing for
  HIV Dementia.
 Then go for Manifestations +
  Functional Impairments.
Importance of 14.08 (N),
Manifestations

 14.08(N)  is the gem of this listing
 – a manifestation is loosely
 defined, it can be anything that
 does not fit into the rest of the
 Listing structure – fatigue, med
 side effects, etc. It was meant to
 be a catch-all.
Definitions, Introduction

   Constitutional symptoms or signs, as used in these
    listings, means severe fatigue, fever, malaise, or
    involuntary weight loss.

   Fatigue: a frequent sense of exhaustion that
    results in significantly reduced physical activity
    or mental function.

   Malaise means frequent feelings of illness, bodily
    discomfort, or lack of well-being … significantly
    reduced physical activity or mental function.
Manifestations

   Using 14.08(N)
    -   Establish fatigue/side effects, etc. using
        questionnaire to physician, HIV case manager or
        friend/family.
    -   HIV questionnaire in materials for symptoms
    -   Build layers of evidence: it is more powerful if it
        comes from multiple sources.
    -   Manifestations require documentation of
        Functional Impairment, other sections do not.
Medication Complications

   Diabetes, heart disease, lactic acidosis
    – call ’em manifestations!
   These conditions may not satisfy durational
    requirements or listing language, if considered
    outside the HIV / AIDS listing.
   Peer journals recognize such conditions as CAUSED
    by the meds means such manifestations CAN be
    argued under 14.08(N).
Manifestations/Frequency

   “As used in these listings, “repeated” means that the
    manifestations occur on an average of three times a
    year, or once every 4 months, each lasting 2 weeks
    or more;
   or the manifestations do not last for 2 weeks but
    occur substantially more frequently than three times
    in a year or once every 4 months;
   or they occur less frequently than an average of
    three times a year or once every 4 months but last
    substantially longer than 2 weeks.”
   No one seems to be counting.
Functional Criterion

   “To satisfy the functional criterion in a listing,
    your immune system disorder must result in
    a “marked” level of limitation in one of
    three general areas of functioning: Activities
    of daily living, social functioning, or difficulties
    in completing tasks due to deficiencies in
    concentration, persistence, or pace.”
“Marked”

   “… means more than moderate but less
    than extreme [and is defined by] the nature
    and overall degree of interference with your
    functioning. You may have a marked
    limitation when several activities or functions
    are impaired, or even when only one
    is …“[M]arked” does not imply that you
    must be confined to bed, hospitalized, or
    in a nursing home.”
HIV/ Hep C: Co-Infection

   “We consider . . . the interactive and cumulative
    effects of your treatments. For example, many
    individuals with immune system disorders receive
    treatment both for their immune system disorders
    and for the manifestations of the disorders or co-
    occurring impairments, such as treatment for
    HIV infection and hepatitis C. The
    interactive and cumulative effects of these
    treatments may be greater than the effects of each
    treatment considered separately.”
Toxoplasmosis

    A definitive diagnosis of toxoplasmosis of
    the brain is based on brain biopsy, but this
    procedure carries significant risk and is not
    commonly performed. This condition is
    usually diagnosed presumptively based
    on symptoms or signs of fever, headache,
    focal neurologic deficits, seizures, typical
    lesions on brain imaging, and a positive
    serology test.
HIV in Women

   “Many of these manifestations (for
    example, vulvovaginal candidiasis,
    pelvic inflammatory disease) occur in
    women with or without HIV infection,
    but can be more severe or resistant to
    treatment…”
Drug Holiday

   A structured treatment interruption (STI, also
    called a “drug holiday”) is a treatment
    practice during which your treating source
    advises you to stop taking your medications
    temporarily. An STI in itself does not imply
    that your medical condition has improved;
    nor does it imply that you are noncompliant…
Practice Tips

   Ask the client to keep a calendar of symptoms,
    medications and side effects for a few weeks.
    More time than this can be depressing for the
    client and repetitive for the judge. Submit to the
    judge with brief.
   Get a printout from the pharmacy for the past
    several years, usually this is an very impressive
    list and obviates putting it into the OHA form.
UWA, TWP, EPE, EXR

   Effect: as the wait for hearing lengthens,
    more people will be forced to try to work.
   Don’t give up on the cases with episodic
    work, they are complicated but can be won.
Further Revision of 14.08 Needed

Further revisions to the HIV infection listings are
    needed
    to reflect advances in medical knowledge,
      treatment, and methods of evaluating HIV
      infection
    to address problems individuals disabled by
      HIV infection have faced in SSA claim
      evaluations
Further Revision of 14.08 Needed

1. Written guidance and training are needed
    on some important issues
   A. Consideration of subjective evidence
   B. Consideration of claimants who are non-
      responsive to treatment
Further Revision of 14.08 Needed

2. Specific changes are needed for some of
   listings
    to reflect current understanding of
      appropriate objective and subjective
      indicators of those impairments
Specific Changes Needed for
Listings

 A. Add Medical Criteria for Co-infection With
   Hepatitis B or Hepatitis C (Section 14.08(D))
       Specify that interplay of the two infections
        must be considered on an individualized,
        case-by-case basis
 B. Accept Subjective Evidence Related to
   Diarrhea (Sections 14.08(I) & 114.08(I))
       Specify clinical indicators, not just objective
        indicators
Further Revision of 14.08 Needed


3. Chronic pancreatitis should be
   added as a “stand-alone” listing
Further Revision of 14.08 Needed

4. Additional manifestations should be
   referenced in Section 14.08(K) &
   114.08(L)
  A. Add general language: “Special
     consideration should be given to other
     conditions, signs and symptoms deemed
     by the primary care provider as
     contributing to substantial functional
     limitations.”
Reference Additional
Manifestations

B. Reference specific additional
  manifestations that impair the functional
  capacity of a person with HIV
     1. Impaired  mental functioning
     2. Morphological abnormalities
     3. Metabolic abnormalities
     4. Infarction and cardiac problems
Resources for PLWA

   Newly infected HIV+ claimant being treated
    @ a county facility and not getting access to
    meds, labs, -- should be eligible under Ryan
    White Care Act for free medical treatment at
    an approved AIDS medical facility.
   ADAP pays for medications, part of
    prevention for the uninsured. Google it.
To Join HIV List Serve

A great daily conversation on what’s new in the
  world of HIV Legal:

http://service.wnylc.com/email.signup/email.sig
  nup.cgi
For Further Information

   contact info again:
    –   Sarah Patterson, sarah@sarahpattersonlaw.com



   All these slides available to download at
    www.sarahpattersonlaw.com, under what’s new tab.

   Comment letters to SSA available from Lambda Legal
    website (www.lambdalegal.org)
   See also: Sarah’s snappy new blog on HIV
    issues related to disability:
    www.sarahpattersonlaw/news.
    Exchange links? Leave a comment?