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									                               Navigating Your Health Insurance
                                        March 1, 2009
                                    Tami Lewis, RN, CCM

GRETCHEN WALTON: Good morning, everyone. My name is Gretchen Walton, and I’m
with the Young Survival Coalition [http://www.youngsurvival.org], Houston affiliate. Welcome.

Tami Lewis is a corporate trainer and senior clinical case manager for the Patient Advocate
Foundation in Newport News, Virginia [http://www.patientadvocate.org]. She earned her RN
from Iowa Methodist School of Nursing [http://www.educationdepartment.org/info/153551], and
she currently holds an active license to practice in the state of Iowa. Her 15-year bedside career
was spent in critical care, in which she focused on post–open heart surgery, pediatric and dialysis
care. Ms. Lewis received certification as a case manager in 1998 while working with the
Principal Financial Group [http://www.principal.com]. Throughout her career, she has prepared
training programs and has been involved in training new employees.

Give her a round of applause, everyone. (Applause)

TAMI LEWIS, RN, CCM: Thank you. I’ve been looking forward to this conference for a long
time. I was in a car accident on Christmas day and I broke my leg. And all I could think about
was that, when I showed up for this conference, I’d be able to walk and those crutches would be
gone. I know it pales in comparison to what a lot of you in the room have had to deal with, but
for me it’s monumental. So if I don’t move much, that’s why. I’m still just learning how to walk

How many people in here are patients? Everybody? Or do we have some providers? Everybody’s
a patient. Is there anybody that’s a healthcare provider? Okay. Does anyone understand the
insurance world? Okay. Well, I hope you’ll have a better understanding [of it] after we finish this
little training session, and that you’ll have a better understanding of what to look for in insurance
policies, how to go about [appealing an insurance provider’s decision], how to go about applying
for Medicare—all kinds of different things. We’ve got all kinds of fun stuff to learn about.

Let’s talk about insurance policies … First and foremost, you want to understand the type of
policy you have … There are multiple kinds of insurance policies, so you need to understand the
kind of policy that you have. You need to understand what the covered benefits are. Every policy
lists its covered benefits, non-covered benefits and exclusions. You need to [determine] what
those covered benefits, those non-covered benefits and those exclusions are. [Some] policies
cover a mastectomy but not outpatient chemotherapy. It’s just excluded—it’s just flat-out not
covered under the policy. [If your insurance includes that policy,] you’re going to have to look
for alternate funding sources in that kind of a situation.

Another key thing: Any time … the first letter of a word is capitalized, that means it is defined in
the Definitions section of the policy. [For example,] if it says ―non-covered benefits Not
Medically Necessary,‖ with the N, M and N all capitalized, you’ll see ―Not Medically
Necessary‖ defined there.
Know if your policy has a specific network. That goes back to the type of policy you have.
Understand that [if your policy covers] out-of-network care—[for example,] if you have a
PPO—you’re going to incur a lot more in out-of-pocket costs. There are what I like to term
―hidden costs‖ in such policies. The claims are subject to [partial payment in accordance with the
insurance company’s definition of] the ―usual and customary fee‖ [for each service]. For
example, if a doctor charges $1,000 [for a visit] and your insurance company’s ―usual and
customary fee‖ for a doctor visit is $100, the company will pay only $100, and the doctor can bill
you for the other $900 because that doctor is out of network and, therefore, doesn’t have a signed
contract [with your insurance company]. It’s that kind of thing—the ―usual and customary fee‖
thing—that you really have to watch out for.

Monitor the monetary limits that are [stipulated in] your policy. Many people who talk to us say,
―But I’ve got a $5 million lifetime maximum.‖ But [it turns out that] written in the policy are
internal limitations, such as a limit of $1,500 per calendar year for outpatient radiation therapy or
$100 per visit for outpatient chemotherapy services. [People see that] there is a $5 million
lifetime maximum and think, ―Oh, I’m good to go,‖ but inside the policy are written all these
other little [stipulations]. So you’ve got to keep track of those [stipulations] as well. And we …
went in[to the policies to see] if there are any specific benefit limits—[on] home health care,
outpatient therapies—transplants is a huge one.

[Let’s talk about the] types of policies that are out there. A ―catastrophic coverage only‖ policy is
a policy that provides inpatient care, maybe one or two doctor visits a year, maybe some lab
work and maybe a mammogram—period. If you end up having to go to your doctor more than
once a year, you have to pay out-of-pocket for those visits. ―Catastrophic coverage only‖ policies
are probably the worst type of policy out there because of the their limitations. A lot of times,
these policies also have very limited lifetime maximums—say, $250,000 for the covered
individual for the lifetime of the policy. That’s not much money, especially given the cost of
[health care] today.

Health maintenance organizations, or HMOs … have contracts [with specific network providers,
and they cover the charges of only those] network providers. If you go outside of the network,
the policy will not pay for [the charges you incur]. You can appeal to an HMO [in some
instances]—let’s say, for example, that, for whatever reason, the HMO has no oncologist [that
specializes in the type of breast cancer you have]; you can appeal to have the HMO pay in-
network rates for [services provided by an out-of-network] oncologist—but it’s only in that type
of situation that you’re going to get an HMO to pay for out-of-network care. And, again, the
charges reimbursed for that out-of-network care will be subject to those ―usual and customary
fee‖ standards.

Preferred provider organizations, or PPOs, are a little bit better than HMOs. PPOs allow for out-
of-network care. Typically you’ll see PPO plans that are 90/70 or 80/60. 90/70 means that they
pay 90 percent of [charges for services provided via] in-network care and 70 percent [of charges
for] out-of-network care. Same thing with 80/60—[they pay] 80 percent of charges incurred via
in-network care and 60 percent [of the charges incurred via] out-of-network care. And some
PPOs have separate deductibles and out-of-pocket [fees] associated with [their plans]. That’s one
thing to look at. In some policies [deductibles and out-of-pocket fees are] considered one and the
same, and you accumulate them together; in other policies you have two separate [thresholds] to
meet. [Keep such policies in mind] when you’re considering using whether to use in-network
services or out-of-network services.

Employer-preferred policies: [In these policies, the employer that provides the health insurance
decides who is in network and who is not. For example, in one employer-preferred insurance
organization in Omaha, Nebraska,] the Lied Transplant Center, [a partner of] the University of
Nebraska Medical Center [http://www.nebraskamed.com/transplant/], is in network, but other
transplant facilities are not.

Point-of-service policies: [These policies combine some aspects of an HMO with some aspects
of a PPO; they cover in-network costs and some part of out-of-network costs.] Again, that would
be if you go to Lied Transplant Center—that’s a point-of-service [facility]. [The policy says the
Lied Transplant Center is] like a center of excellence [under its plan], so insurance would pay for

Indemnity plans: You don’t see those a lot anymore, since the managed care took over the world,
the nation, in the late 1980s; early 1990s … but, when I was very little, indemnity plans were
what my parents had. No matter what, the indemnity plan paid. It just paid—no questions asked.
They were called ―golden Cadillac policies.‖ You went to the doctor; it paid. It didn’t even ask
whether or not you needed to [see that doctor]. These are the plans that allowed people to go into
a hospital—you know, a doctor would say, ―You need two weeks of rest and relaxation,‖ and he
or she would put you in the hospital for it. The indemnity plan paid; no questions were asked …
for the most part, the indemnity plans that exist today pay claims based on ―usual and customary
rates.‖ If the provider that you choose to go to charges more than those ―usual and customary‖
rates, you’re looking at incurring out-of-pocket costs. [Editor’s Note: Indemnity plans are also
known today as ―fee-for-service‖ plans. These plans are costly, so investigate thoroughly before
purchasing one. One source for information: http://www.allinsuranceinfo.org/health/indemnity-

Self-funded and self-insured policies: With a self-funded policy, the employer group looks at
[the benefits provided by] different insurance companies—the Blues [Blue Cross Blue Shield];
Cigna; Aetna; whomever—and then the employer group says, ―We like this benefit from this
policy, and we like this benefit from this [other] policy.‖ [It writes a policy that provides its
employees the benefits, from all of the companies, that it wants included]. The employer group
then hires the Blues to be the third-party administrator, or TPA, that administers the terms of the
contract. Blue Cross Blue Shield looks at each claim and decides whether or not it’s going to pay
it. When the check is cut, the employer group holds the financial liability [on that claim]. With
self-insured policies, the employer group administers its own claims. PepsiCo, IBM, Texas
Instruments—[it’s usually only the huge companies that can afford to have] self-insurance
policies, and they take care of everything themselves.

Any questions on …the fact that the employer holds the financial liability [in a self-funded

Employer-sponsored group health plans: This is the best [available] type of insurance to have,
especially [for someone who] has a preexisting condition. Employer-sponsored group health
plans have to accept you … [You can try to buy an individual policy, independent of an
employer, but those policies] can hold preexisting [conditions] against you if you [did] not have
credible coverage [before], but the longest they can hold it against you for is 12 months. But [it is
riskier for you to] go out and apply [through] the department of insurance in your state [for] an
individual policy, because they’re going to hold that preexisting against you. Some states have
―guaranteed issue‖ laws, which means [the state has] to issue that policy. But then they just jack
up the premiums. I’ve talked to people who are paying $1,900 a month in premiums for an
individual policy. So, employer-sponsored group health insurance is probably the best that you
can get if you’re able to work.

Medicare [http://www.medicare.gov] is for the disabled and the elderly. I think everyone’s
somewhat familiar with Medicare. Unless you’re disabled, [in which case, you may qualify for it
earlier,] you get it when you reach age 65.

Medicaid [www.cms.hhs.gov/home/medicaid.asp] is composed of state-funded and federally
funded programs for the indigent, blind and disabled.

[Going back to] employer-sponsored group health plans [and] individual policies: You apply for
[individual policies] through your state department of insurance. One thing that you want to hope
for is that your state [is governed under a] guaranteed issue [law] if the only way you’re going to
be able to get insurance is through an individual policy. [Otherwise,] you’re going to get turned
down based on preexisting condition—they won’t want to underwrite you.

Risk pools: Some states offer what’s called ―risk pool‖ insurance. It’s for people who would
otherwise be ineligible for insurance coverage—people like many of you, in this room, who have
a preexisting condition. Usually, [in order to be able] to apply for a risk pool in a state, you have
to have been turned down for an individual policy by two insurance companies; you have to be
refused coverage before you’re eligible for the risk pool.

Risk pool coverage is good coverage. It’s just a regular insurance policy that offers the same
[type of coverage that] an employer-sponsored group plan would. But, again, the premiums are
[high]—you could pay well over $1,000 a month for risk pool insurance.

There’s government insurance, such as the Federal Employee Benefit Administration, or FEBA,
and the Government Health Association, or GHA. [Government insurance is available to] people
who actually work for the feds.

State-funded and federally funded programs: Again, these terms refer to Medicare and Medicaid.

How many people in the room have employer-sponsored group health insurance? Okay, good.
Most employer-sponsored group health plans are regulated by what’s called ERISA [the
Employee Retirement Income and Security Act]. The only ones that aren’t are state government
[plans], churches’ [plans], and—there’s a third one; I can’t remember it. I don’t think it’s going
to affect any of you guys, anyway
Insurance appeal laws were written into ERISA back in the mid-1990s. It used to be that you
could appeal to your insurance company until the cows came home. You could still be appealing
five years [after your initial claim]. You’d appeal, they’d deny, and it just kept going round and
round. ERISA, in effect, put in place a stopgap in the appeals process, which actually worked out
well for both the insured and the insurance company. ERISA gives the insured the right to sue if
a denial is upheld [but it also limits the number of times an appeal may be made], and it put an
end to all that stupid paperwork [that used to go back and forth over and over and over again].

Employer-sponsored group plans are, obviously, offered through employers. They are subject to
the federal HIPAA [Health Insurance Portability and Accountability Act;
[http://www.hhs.gov/ocr/hipaa/] laws. Per the HIPAA laws, if you have credible coverage and
you do not have a gap in coverage of 63 or more days, you can roll from one employer-
sponsored group health plan to another employer-sponsored group health plan without
preexisting conditions being held against you. If you have a lapse in coverage of 63 or more
days, you can get onto the employer-sponsored group plan, but it will hold the preexisting
condition against you for 12 months. After 12 months, you’re covered just as others in the plan
are covered. That’s a significant aspect about the employer plans.

WOMAN: Are you safe at 62 [days of lapsed coverage], or is it—

TAMI LEWIS, RN, CCM: At 62 days or less, you’re good. At 63 days or more, the
―preexisting condition‖ rule applies.

WOMAN: If you do COBRA during that period, would that help?

TAMI LEWIS, RN, CCM: COBRA counts as credible coverage, yes.

I’m going to toss just a little extra about COBRA into my presentation. I submitted [my
presentation outline], I think, back in mid-February; maybe even earlier than that. I don’t
remember. But [President] Obama has since passed the economic stimulus package, [so] I’m
going to talk to you a little bit about the COBRA provisions that are included in that. I don’t
know a lot about [the stimulus package as a whole] since it just passed, but we’ll get into the
COBRA part of it.

[You can find out about] individual policies…through the state department of insurance. You can
contact your state’s department of insurance if you are looking for individual coverage —
basically, you’d say, ―I want a list of companies that offer individual coverage.‖ If you have a
preexisting condition that’s already been diagnosed and that you’re going to have to claim on
your statement of health, you want to ask for a list of insurance companies that offer guaranteed
issue coverage. Unlike the employer-sponsored plans for which the ERISA laws apply in terms
of appeals, on individual policies the appellate language is written into the policies themselves.

Individual plans are regulated by the state. And individual policies are not subject to HIPAA—
so, even if you have credible coverage, [insurance companies can deny your application for an
individual policy.] Now, many times they won’t; they’ll recognize that credible coverage. But
they don’t have to. That’s the sad part of that piece.
Risk pools: Again, [this is insurance that is] issued to persons who would otherwise be
uninsurable. [With this type of insurance, the] preexisting condition clause does apply…. If you
apply for a risk pool and you have a lapse in coverage of 63 or more days, the [12-month]
preexisting condition clause is going to apply—although many risk pools feature a six-month
preexisting condition clause, which is better. [This type of policy is] not offered in every state.
These [risk-pool] policies are regulated by the state, and, again, they’re not subject to HIPAA.
But if you have credible coverage, many times risk pools will let you—will write on to them and
not hold [the lapse in coverage] against you.

WOMAN: If you’re switching from company-provided insurance or COBRA to, say, insurance
offered by a state university … would that fall under the government kind of insurance? And
ERISA laws wouldn’t apply? And does that mean that they wouldn’t necessarily have to cover
you for preexisting conditions?

TAMI LEWIS, RN, CCM: A university would offer a self-funded policy.

WOMAN: I get my insurance through my husband, and he works for UC San Diego. And it’s
[inaudible] ERISA. It’s covered and everything. It’s considered [the same as] a regular
employer-sponsored plan.

TAMI LEWIS, RN, CCM: I was going to say that it definitely would be ERISA regulated, but
yeah. And you would still get the certificate of credible coverage and everything.

Government plans, which are offered to employees of the federal government, are federally
regulated. The feds always get involved in everything. Examples: United States Postal Service,
Federal Employees Benefit Plan, government health insurance…. Also, there’s TRICARE for the

Medicare, which, again, is a policy that’s offered to persons age 65 or older and to those deemed
disabled by the Social Security Administration [http://www.ssa.gov/]—such as people with end-
stage renal disease or Lou Gehrig’s disease—is federally funded. Medicaid is composed of a
group of state-funded and federally funded programs. It provides heath coverage for the indigent,
[legal, or ―lawfully admitted‖] immigrants, the disabled, and the elderly. [To qualify as being
disabled, you have to be deemed] disabled by the Social Security Administration; you can’t just
say, ―I’m disabled,‖ and get Medicaid.

WOMAN: My employer is looking to move us to a health savings policy. Do you know
anything about this?

TAMI LEWIS, RN, CCM: Oh, yeah. A health savings account, in my personal opinion, is
probably not the best option for someone who has a preexisting condition. Health savings
accounts are probably—I encourage my kids to get [this type of coverage]. They’re in their 20s
and 30s. I encourage them to get this because they’re healthy.

Health savings accounts [are attached to policies that] have high deductibles … in a way, a
health savings account is it’s like saving for a retirement plan. With every paycheck, maybe your
employer kicks a little bit into your health savings account, and you have to, as well. You have to
contribute to your health savings account. So let’s say that, at the end of the year, you have
$4,000 in your health savings account and you never sought any medical care. You’re good to go
for the next year. That $4,000 just sits there.

But let’s say that, [during that year,] you were diagnosed with breast cancer. You’ve got a $5,000
deductible to begin with—I think $5,000 is the minimum it can be, and the deductible can be as
high as $10,000. And this health savings account is supposed to be what you’re going to use to
pay that $5,000 or $10,000. If you don’t have enough money in your health savings account to
cover your high deductible, you’re going to end up in debt with medical bills, and it’s going to
just keep going, year after year after year.

That’s why I don’t think that a health savings account is the best option for someone who has a
preexisting condition. If it’s the only option, obviously you’ve got to take it. But if you [can], I
would encourage you to take more of a PPO route.

WOMAN: At the company I work for we have a PPO but it has, like, a $6,000 deductible. And
we have a health savings [account plan as well]; I think it covers up to $4,000 of that deductible.
If we didn’t have the health savings account, it would be worse; I mean, it’s kind of nice to have
it on top of your insurance … it might not be a bad thing if it’s in addition to what you already
have for insurance.

TAMI LEWIS, RN, CCM: But the key thing to keep in mind is that the insurance [company
won’t start] paying until that [deductible] is met.

WOMAN: Which happens in, like, two months if you have breast cancer.

TAMI LEWIS, RN, CCM: Well, exactly. And, you know, if you look at it—let’s say you owe
somebody $5,000—say it’s Dr. Smith, your oncologist. What we see happen is that the doctor
then decides, ―Well, I don’t want to treat you anymore; you have this past-due balance.‖ And
you get dumped into collections. That’s why I think that having an HSA [health savings account]
with an HDHP [high-deductible health plan] is probably not the best policy. But, as I said, if it’s
the only option you have, then obviously you’ve got to take that. [The key is] how much money
you can get into that HSA. If you’re a healthy individual and [put money into the plan on a
consistent basis], five or 10 years from now you could have a big chunk of change. And you
could go out and buy yourself a new plasma-screen TV with those funds if you wanted to;
there’s no regulation stipulating that you have to use the money for medical costs. [Editor’s
Note: Federal law stipulates that owners of HSAs must withdraw funds for ―qualified medical
expenses‖; when HAS funds are used ―non-qualified expenses‖ (e.g., a plasma TV), the
withdrawn funds become subject to federal and state income taxes. People under age 65 who
withdraw money for non-qualified expenses must also pay a penalty.]

WOMAN: Actually, our company puts all the money into it. We didn’t put anything into it.

TAMI LEWIS, RN, CCM: Hmm. And it is an HSA?
WOMAN: Yeah.

TAMI LEWIS, RN, CCM: Huh. Well, that’s kind of fortunate, I guess.

WOMAN: Well, there are two parts to it—there’s the part where you can put in money. But, in
the other part, we don’t have to put any money in ourselves. I don’t think I’m allowed to take
that money and buy [just] anything with it—not that I have any left. (Laughter)

TAMI LEWIS, RN, CCM: Any other questions on policies?

WOMAN: Just a comment … in regard to Medicare [and how some people with disabilities may
qualify for it]. I was approved for Medicare in August 2008. In fact, when I went to my local
senior center for information, he fell out of his chair—―You’re not 65.‖ Well, no, of course not. I
was 41.

TAMI LEWIS, RN, CCM: Yes. In case others in the room are not aware and you do apply for
it—[one of the criteria for qualifying for the] Social Security Disability Insurance, or SSDI,
program is that you have to have been working and contributing to Social Security for the
previous five years. If you haven’t been working, the only program you can qualify for is SSI,
which is Supplemental Security Income. And [it’s possible for you to be] deemed disabled [but]
denied monetary benefits under SSI because, say, your husband makes too much money. But the
disability determination … helps in some ways [to qualify for the SSI program].

If you do get SSDI or SSI benefits, once you’ve been collecting those checks for 24 months, you
become eligible for Medicare.

WOMAN: Yes. Unfortunately, I had to leave my job of 17 years to focus on my healing. So I’m
hoping to, at some point, be able to work in some capacity again.

WOMAN: Is the Family and Medical Leave Act [http://www.dol.gov/esa/whd/fmla/] just a New
York thing, or is that a federal thing? I’m not sure.

TAMI LEWIS, RN, CCM: The Family and Medical Leave Act is a federal act, and it applies to
employers who employ 50 or more people within a 12-month time frame.

WOMAN: And then you can go out on that. That’s how my daughter went out.

TAMI LEWIS, RN, CCM: If you’ve worked for your employer for 12 months. You have to
have worked for your employer for at least 12 months.

WOMAN: And they have to hold your health insurance for you. You still have to pay—

TAMI LEWIS, RN, CCM: You’re guaranteed—yes.

WOMAN: You’re guaranteed your health insurance covered while you’re out on disability. And
you have to pay your share of your premiums, whatever that may be.


WOMAN: And that [leave of absence] doesn’t count as ―not working,‖ and you still have your
coverage. You don’t make much money [while on such leave]; you’re not going to be wealthy on

TAMI LEWIS, RN, CCM: Right. [A person who qualifies for a leave of absence under the
FMLA may take up to 12 weeks leave in a 12-month period,] but those 12 weeks can be paid or

WOMAN: And it can be extended to more than 12 weeks, because yours was longer than 12
weeks, right?

TAMI LEWIS, RN, CCM: [Under the] Family and Medical Leave Act, [a leave of absence]
cannot [be extended beyond] 12 weeks [in a 12-month period]. What can happen is if they do
their 12-month time frame—let’s say they do it March 1 to February 28, and you took your
December, January, February and then reapplied in March [so it was the beginning of a new
year], that’s the only way it’s going to extend. But … you could [then] go on short-term

WOMAN: I guess that’s what she did.

TAMI LEWIS, RN, CCM: Probably.

WOMAN: At least it helps you to keep your health insurance.

TAMI LEWIS, RN, CCM: It gives you the employer-subsidized premiums. You still have to
pay your portion as if you were reporting to work. And it protects your job position—[in that
regard,] it’s as if you were reporting to work every day. But, [if you’re gone for]12 weeks and
one day, the employer can fire you. And that happens.

WOMAN: [Inaudible]

TAMI LEWIS, RN, CCM: No, not always. But you’d be surprised at how many people we talk
to who actually do get fired or who are told that their positions have been eliminated or some
goof thing.

WOMAN: I have a question about preexisting conditions. Is that how we’re going to be labeled
forever and ever? Or is there—because I heard that some places or some—I don’t know if it’s
with life insurance or what—but I think that, after five years, that they can’t claim that, or—I’m
not sure if there’s a specific time line.

TAMI LEWIS, RN, CCM: Currently, [because of] the way the health insurance laws are
[written], you’ll be labeled [as having a preexisting condition] for the rest of your life. I have
great hope [that the laws will be changed now that] President Obama [is in office]—I’m keeping
my fingers crossed—because he has touted health care reform, and [the issue of preexisting
conditions is] one of the big things that might change. And part of the stimulus package that he
passed does address some aspect of preexisting conditions. While we’re here, I might as well tell
you about what he’s passed.

Does anybody understand it yet? Did anybody watch his address to the nation? So, you heard
that something was going on and you understood a little bit of it. It’s very possible that some of
you in the room have been affected by this, or will be affected by this … [In accordance with the
American Recovery and Reinvestment Act of 2009,] if [your employment was] involuntarily
terminated [and you were eligible for COBRA] between September 1, 2008, and December 31,
2009, you may well be eligible for what’s called COBRA continuation coverage. If you became
eligible for COBRA benefits on or after September 1, 2008, and you did not elect them, you
became eligible for COBRA, elected it, and then had to drop it because you couldn’t afford it or
you’re still within your 60-day-election time frame—you have 60 days [from the date of your
termination] to elect COBRA—you are eligible for the subsidy. [Under COBRA continuation
coverage,] you pay 35 percent of the COBRA premium and either your employer, if it’s self-
funded, or the insurance company, if you’re an insured group, pays the [other] 65 percent. [If this
subsidy weren’t in place,] you’d pay 102 percent of the premium [in order to stay on] COBRA.
So this is huge. [For more information, visit http://www.dol.gov/ebsa/cobra.html or LBBC’s
story on this topic at http://www.lbbc.org/content/news/economic-stimulus-package-could-

WOMAN: Did you hear whether or not they are going to pass that?

TAMI LEWIS, RN, CCM: It’s passed. It’s law; he signed it into law.

WOMAN: How do you apply for that?

TAMI LEWIS, RN, CCM: Well, that’s the other thing … he signed it into law on February
17… [and it became law as of that date]. A lot of little things are written into the act—for
example, the secretary of the treasury has to prescribe—that’s the language they use—―prescribe
the notification proceedings.‖ And then the U.S. Department of Labor will issue the written
notice. That will be mailed out. I think that employers have to inform any eligible employees of
their eligibility for the subsidy …

WOMAN: If I was already on COBRA, how do I get into this?

TAMI LEWIS, RN, CCM: Well, that’s another issue. When did you start your COBRA?

WOMAN: February 1.

TAMI LEWIS, RN, CCM: Just this past February 1?

WOMAN: Yes. My husband was terminated right before the Christmas holiday.
TAMI LEWIS, RN, CCM: When did your other insurance coverage end?

WOMAN: December 31.

TAMI LEWIS, RN, CCM: So you’re still within your 60-day election period for COBRA. So,
yes, you will be eligible for the COBRA subsidy, as long as—and here’s the other big thing—
[you meet the income requirements]. People who file tax returns as single filers must make
$125,000 or less; it’s $250,000 or less for joint filers. Now, everybody in the room probably falls
into those categories. It’s not one of those [situations in which you have to make] $11,000 or
less—you know, where everybody’s, like, ―That doesn’t apply to me.‖ This pretty much applies
to the bulk of the [people in this] country.

WOMAN: Not an issue. (Laughter)

TAMI LEWIS, RN, CCM: Well, exactly. And, if you make … $125,001 to $145,000 as a
single filer or $250,001 to $290,000 as a joint filer, you get a partial, phased-out subsidy. So you
still get a little assistance. If you make more than $290,000 as a joint filer or $145,000 as a single
filer, you don’t get any assistance.

In terms of signing up for it, one of the things I’ve been encouraging people in your situation to
do—I actually spoke at home in Des Moines yesterday at our [chapter of the] Leukemia &
Lymphoma Society [http://www.leukemia-lymphoma.org], and people there asked the same
question: ―Now, how do we get it?‖—is to contact [their former employer’s] human resources
department and let them know that you’re aware that you can apply for this subsidy and that you
want to make sure that you get notified. If you guys do start calling up these human resources
departments, it’s highly probable that you’re going to get somebody on the other end of the
phone going, ―Uh, uh, uh, uh, uh.‖ You know—the person is not going to know what to say,
because [this act was passed so quickly]. It just happened, and there are still many questions
about it. But you [definitely] would be eligible.

WOMAN: So it goes through the company, then.

TAMI LEWIS, RN, CCM: Yes. Your [former] employer has to send you that notification of
COBRA continuation coverage. You’re what they consider ―an assistance-eligible individual,‖ or
an AEI. They’ve always got to have these catchphrases, you know.

WOMAN: What if the company closed?

TAMI LEWIS, RN, CCM: If the company closed, you wouldn’t have a COBRA policy to be
involved in. If the company closed there’s no longer a group plan, so there’s no COBRA.

WOMAN: I’ve been hearing—I don’t know if it was in regard to Medicare or Medicaid or both,
but someone used the term ―doughnut hole.‖

TAMI LEWIS, RN, CCM: That’s Medicare. The doughnut hole [pertains to] Medicare
prescription drug coverage Part D … I don’t know [how Congress] came up with that thing. [In
the standard] Medicare Part D plan, [there is a gap in coverage between the initial coverage limit
and the threshold for catastrophic coverage. That gap is known as the gap, or the ―doughnut
hole.‖ There are nonstandard plans available that cover all or part of that coverage gap, but they
usually carry higher premiums.]

Here’s how the doughnut hole works. I don’t know the [specific] figures off the top of my
head—I apologize for that—but, for the first X number of dollars, you pay a portion and
Medicare pays a portion. Then, when you hit—I think it’s, like, $1,250—you pay 100 percent of
the cost up to [I believe] $4,600. So there’s this big gap in which an individual has to pay all the
costs of his or her medicines. Once you hit $4,600 in total costs—again, I’m not positive that’s
the exact figure—Medicare starts to pay 95 percent of the costs of the drugs, and you pay only 5
percent of the cost. But, again, if you’re on Gleevec and it costs $6,000 a month—5 percent of
the cost of [a month’s worth of] Gleevec is $300. That’s $300 a month for just one drug. And
I’m sure you guys [have to deal with] many, many [expensive] drugs.

If you know somebody who is looking into Medicare plans and who is on a lot of medications,
[you might suggest that he or she look for a plan that offers] gap coverage.

WOMAN: I’m on COBRA; it started in February. My old employer is switching over to a new
insurance company. Do they have to switch me as well? They notified me that I have to be
switched over.

TAMI LEWIS, RN, CCM: Yes. [In terms of your coverage,] you’re [still] a member of the
group. If the group changes its policy, as a member of the group you have to change your policy
as well.

WOMAN: When I was diagnosed, I was in an HMO. I wanted to see other doctors who were
outside of my HMO, [which meant I’d have] to pay a lot of money. What I decided to do—I
work for a government agency, the county, and it pays for my and my husband’s insurance. I
switched to a POS [point-of-service plan] while my husband stayed in the HMO because I
wanted the continuity of seeing the same doctor who was in my HMO but the flexibility to see
other doctors without having to pay a lot of money. Am I doing the right thing, or am I spending
money needlessly by having two insurances? Is there an alternative? I was paying $300 to $400.

TAMI LEWIS, RN, CCM: You don’t have two insurance plans. It’s just that your husband is
covered under a different policy. Is [that] what you’re saying?

WOMAN: Right.

TAMI LEWIS, RN, CCM: Personally, if I had a preexisting condition, I would probably get off
an HMO, simply because you never know what’s going to happen. So, yeah, I think you
probably did do the right thing. I’m not saying HMOs are bad. They’re not all bad. It’s just that
sometimes they’re so restrictive that—

WOMAN: Yeah.
TAMI LEWIS, RN, CCM: Oftentimes we’ll hear people say, ―Well, I don’t care how much it
costs.‖ And I always say, ―Yeah, but you will. You will.‖ The day is going to come when you
will care what it costs. And what are you going to do then? [I don’t say that] to discourage
them—but you’ve got to look at the reality [of the situation]. [But] that’s the problem with
HMOs—you’re very limited in terms of who you can see and the institutions you can go to.

WOMAN: I realize that. And I didn’t like that. I didn’t think I was getting the best treatment,
given that restriction.


WOMAN: I have some questions about Medicare. There are many different types of Medicare
plans. Some are the traditional; some involve HMOs. Where can I get information about which
one is the best? I’m from Houston, and I know [that, for example,] MD Anderson
[http://www.mdanderson.org], doesn’t take every single [type of] Medicare insurance—right?
Take some of the HMOs—they told me they’re not part of them. Is that true?

TAMI LEWIS, RN, CCM: That’s a little bit beyond my knowledge base; I don’t know what
MD Anderson will or won’t accept. My suspicion is that, yeah, they probably don’t participate in
HMOs because MD Anderson is world renowned; for every one person they turn down they’ve
got 10 more waiting in line to come through their doors. So it’s no skin off their back. No
offense to them—it’s just, like, you know, if they choose not to honor this plan, they’re not going
to be hurting for business. Trust me.

If you go to the Medicare website [http://www.medicare.gov], you’ll see a section called
―Compare Health Plans and Medigap Policies in Your Area,‖ and you’ll be able to compare
plans. You’ll see exactly what benefits are on each plan. There are [many different kinds of
plans.] There’s straight Medicare A and B, and then there are Medicare Advantage plans. There
are Medicare HMOs. There are Medicare replacement plans. There are all kinds of plans out
there. Contact your providers to see which network covers them.

That’s probably the best advice I can give you … that might help.

WOMAN: [Inaudible], because I notice sometimes for a cancer patient, [inaudible-]. And the
experience we had—by the time they’re underinsured through Medicare, Medicare won’t
[inaudible]. By the time they [inaudible-] diagnosed with the cancer, they go to MD and—they
went to MD and MD told them, ―We don’t accept.‖ See? So we probably need community
outreach [inaudible-] because you don’t want to wait until you’re diagnosed with cancer and MD
Anderson denies you.


WOMAN: There were several cases like that. And now they try to switch. And if you’re on
Medicare, you cannot switch anytime you want.

WOMAN: [Inaudible]

TAMI LEWIS, RN, CCM: January 1 to March 31, exactly. So it’s still open enrollment for
Medicare—anybody can switch plans until March 31. They can still—

WOMAN: [Inaudible] cancer diagnosed.


WOMAN: So I thought that, maybe, if—am I right? If I stay in Medicare, probably [inaudible].
Don’t go for the HMO. [Inaudible] you can go anywhere.

TAMI LEWIS, RN, CCM: Well, I don’t know. They have to be a Medicare-certified provider
to accept Medicare. And I would assume MD Anderson is. The other thing, too—see, you’re
probably working with Texas residents.

WOMAN: Yeah.

TAMI LEWIS, RN, CCM: Whereas we work with all 50 states. We might talk to somebody in
Seattle, Washington, who wants to go down to M. D. Anderson, but M. D. Anderson doesn’t
accept his or her insurance. Well, guess what? That person is not getting in. That’s just the long
and short of M. D. Anderson. If you don’t have insurance and you don’t live in Harris County in
Houston, you’re not getting in. The only uninsured people they’re going to let in are Harris
County residents. And, as I said, they just—they don’t have to worry about it. It’s an excellent,
excellent facility but—yeah.

WOMAN: [Speaking from], I guess, the provider’s side of things—HMOs do provide a little
benefit [in that regard]. They usually have better care managers within those organizations. If
you’re lucky enough to have been assigned a care manager and you do want to go somewhere
like M. D. Anderson—I’m not sure about the Medicare HMOs but, you know, in the case of this
young lady up here—if you get a good care manager, she’s going to help you find that care you
need, even if it’s from an out-of-network provider. [She’ll] negotiate a rate, and your rate can
potentially be the same as your in-network rate. [Oftentimes,] providers don’t sign up [to be part
of an HMO] just because they don’t want the restriction.

TAMI LEWIS, RN, CCM: Okay. [Now let’s] talk about appealing an insurance company’s

You guys may remember that, when I was talking about the employer-sponsored group plans, I
said they’re regulated by ERISA. What are those laws? ERISA clearly defines the time frames
allowed for appeals. What it also does is if the time frames are exhausted—let’s say that you are
trying to appeal a denial of Taxol or whatever, and you’re past your 12 months from the date of
service and you didn’t get it submitted in time, the insurance company can refuse to read your
appeal. They can refuse to accept it.
It also allows for an insurance company to be penalized if the company delays in responding to
your appeal—so, if you submit an appeal and you haven’t received a response in [the allotted] 60
days or 63 days later, under the ERISA regulations the company can get fined for each day that
it’s over the 60-day limit or the 30-day limit or whatever it is.

Under ERISA, the insurance company has to base its denial on the plan’s language. I always
think it’s kind of cute people I talk to on the phone say, ―I need help appealing my insurance
company’s denial.‖ I’ll say, ―What was the reason for the denial?‖ ―They didn’t want to pay.‖
Well, that isn’t right; the company didn’t write you a letter that says, ―We’re not paying because
we don’t want to.‖ What reason did they give? [Under ERISA, the company has] to quote the
exact language of the its policy on which it’s basing its opinion. They could say, [for example,
that the medical procedure] is ―experimental or investigational.‖ They could say it’s
―cosmetic‖—[this can occur when] breast reconstruction surgery [is involved]. I don’t know if
any of you ran into that—[an insurance company denying such a claim because it considers the
surgery ―cosmetic in nature.‖ ―Not medically necessary‖; ―not a covered benefit‖—the company
has to quote the exact language used in its policy. If you get a letter of denial that does not give
you the exact language, you need to call the company and tell the representative to send you a
letter that contains that language. You want them to give that to you.

WOMAN: What was the first one you said? ―Cosmetic‖; ―not medically necessary‖—what was
the other one you said?

TAMI LEWIS, RN, CCM: ―Experimental or investigational.‖ Those are probably the big three.
[There are also the simple] ―not a covered benefit‖ and ―an exclusion of the policy.‖

[There are several] types of denials. The first one we’ll discuss is a retrospective denial. That
means that care has already been given and that the insurance company is denying all or part of
the claim. You find this out on your explanation of benefits, [which lists] codes for reasons it’s
been denied. Once you receive that explanation of benefits, you have 180 days, under the ERISA
regulations, to appeal that decision. Most plans give you up to a year, but they have to give you
180 days.

Once you submit an appeal of a retrospective denial, the insurance company must respond to you
within 60 days or send you notification that it’s going to be delayed in its response. If it upholds
its denial, the insured has 60 days to appeal again, and the insurance company has 60 days to

A preauthorization [denial]—we see many of these at Patient Advocate Foundation—is a denial
of [payment for] care that has yet to be given. Oftentimes we see this with [proposed] stem cell
transplants for cancer patients or with [proposed] off-label use of drugs. The insurance company
writes a letter denying the preauthorization and, again, the insured has 180 days to appeal the
decision. And, again, some insurance companies give people a full year. Once the insured
appeals the decision, the insurance company has 30 days to respond or send notification that it’s
going to be delayed in its response. The insured then has 30 days to appeal again. You get the
[Another type of denial is called an] expedited [denial]. We don’t see this [type] very often.
Actually, the only time I ever did see one was when I was working at the insurance company as a
case manager. [Expedited denials come into play when] the patient’s life is at risk and a decision
must be rendered [by the insurer] within 24 to 48 hours [because] the decision is going to [mean
the] difference [between life and death for] the patient. For example, the only one that I ever
handled when I was working at Principal was for a gentleman who had gone in for open-heart
surgery. They wanted to [give him] an artificial heart, like the Utah Drive, [a compressor that
regulates an artificial heart], and the insurance company had said, ―No, we’re not paying.‖ An
expedited appeal was filed because the patient was going to die without the treatment. So you
can’t—a lot of people call up and say, ―I want to expedite this appeal.‖ Well, you might be able
to get it done in fewer than the [mandated] 30 [or] 60 days, but you’re not getting it done in a day
or two—because you’re not going to die [in a day or two unless you receive treatment]. That’s
what an expedited appeal is; you probably don’t have to worry about that one so much.

There are different levels of [denial and] appeal … There’s a first level, a second level, and a
final level. With a first-level appeal, typically your medical provider has already submitted some
paperwork to the insurance company and started the appeals process for you. [Medical providers
are] very familiar with this [process]; they deal with this every single day. Usually they have
someone in their billing department or in an insurance department, depending upon how big the
provider group is, that deals with insurance appeals. At any rate, typically they’ve already started
this. It’s done internally within the insurance company by their medical director. So—in a first-
level appeal, the patient’s claim has been denied and the medical provider is appealing that initial

[Here’s what we] at Patient Advocate Foundation do when someone [who is in this situation]
calls us [for advice or assistance]. We ask for any information that’s already been submitted in
that appeal. We want to see the denial letter. We want to see your [insurer’s] contract language,
and we want to see what the doctor submitted. If you’re calling us for help, we want to know
exactly where you stand so that we can determine whether we want to quickly shove something
into this first-level appeal or we are okay with letting it [go as is] because we think that it will fly
and that the insurance company will overturn [its initial denial].

Second level appeal: Now it’s getting serious; the insurance company has now denied the claim
twice, so you’re at your last available level of appeal under ERISA regulations. This is your final
[shot]; basically, it effectively ends the appeals process. Remember when I said [that, in the old
days,] you could appeal until the cows come home? This is what ERISA did—it stopped that. It
said, ―Okay, if you get denied on second-level appeal, the denial stands.‖ [Second-level appeals
are handled] externally, outside the insurance company, by a non-vested third party. A lot of
these appeals are [handled by oncologists who have pertinent experience—say,] an oncologist
who deals with females who are between the ages of 30 and 40, who have with a history of
breast cancer, and who have been treated with the same types of drugs that [the person making
the appeal] was treated with. Such oncologists are not employed by the insurance company and
have no vested interested in making this a positive or a negative decision.

This is where the HMOs got a lot of flack; [it turned out that] they were [giving doctors]
kickbacks to uphold denials. I don’t know if you guys remember [news reports about] that about
10 years ago … I probably should have put a breast cancer example in there [instead of] a
leukemia [example]; sorry about that.

Typically, the decision [made in regard to a second-level appeal] is binding on both parties. If the
denial’s upheld, it’s over; the insurance company isn’t paying. If the denial is reversed, it’s over;
the insurance company is paying. And if, in a second-level appeal, the denial is reversed, the
insurer can’t then say, ―Wait a minute; we’re only going to pay this part.‖ It has to pay the claim
[in full].

Again, we at Patient Advocate Foundation will assist in providing additional information to help
support [an appeal]. Oftentimes, insurers justify the denial of a claims by citing its ―preexisting
condition‖ clause. So we’ll look [into the relevance of that]. You know, [the fact that] your
policy went into effect September 1 and you were diagnosed with breast cancer September 6
does not mean that you actually knew that you had breast cancer before September 1. [In that
type of situation,] we’ll do some research on that.

When the second-level appeal is completed, meaning you’ve exhausted all your appeal levels
through ERISA, you get what’s called a final letter. If your final letter says, in the last paragraph
… ―You have now exhausted your appeals process and have the right to pursue civil action in a
court of law,‖ you’re done making appeals to your insurance company. It’s over once you get a
letter that says that.

So, what does that mean? Well, I just got done saying you couldn’t appeal anymore, didn’t I?
But, for some people, there is one last appeal [that can be made]: if your insurance is self-funded
or self-insured by your employer, you can appeal to the employer group. Remember, such
employers hold the financial liability for the claim. Maybe Cigna was the company administering
the claim and upholding all these denials. That’s fine. Now what you can do is write what’s
called a compassionate appeal to your employer group. In that appeal, you’re going to ask them
to go ahead and pay that claim outside the terms of the contract.

Now, why would they do that? There are a lot of various reasons as to why they would—or
would not. Who knows? Maybe they’ll find some tax [advantage to paying it] … Sometimes you
can prove that it’s more cost-effective [for them to pay it]. For example, when I worked at
Principal [the company] entered into a ―release and agreement‖ with the mother of a boy who
had leukemia. [The doctors] wanted to admit him for one week each month for, like, 14 months
in order to give him chemo in the hospital. The mother was a nurse, and she wanted to deliver
the chemo to him at home; in a home setting. It was a lot more cost-effective than putting him in
a hospital, and we had a home healthcare agency that could help. So the self-funded employer
group agreed to it and went ahead and paid for that care because, even though it was not typical
care, it was more cost effective.

When you’re appealing a decision by an insurance company, you can only state facts. In a
compassionate appeal, you can write a big, long letter about, how, you know, ―I need this; I’m
going to die without it.‖ You can attempt to tug at the heartstrings of the insurance company
employees. But, at the end of the day, the bottom line is that it’s a business. If the policy doesn’t
cover it, the policy doesn’t cover it. And, very often, no matter how many people you make cry;
no matter how many hearts you break with your story, they will decide not to pay—because it’s a
business. Still, in your compassionate appeal, that’s exactly what you want to try to do: break
your employer’s heart so that it will pay for this care. That’s one of the advantages of working
for a self-funded [or] self-insured employer.

[Regardless of the type of insurer you have, you also] can pursue civil action in a court of law. If
your policy is regulated by ERISA, you pursue civil action [against the insurance company] in a
federal court. If it’s regulated by the state, you pursue your action [against the insurance
company] in a state court. And if it’s self-funded [or] self-insured, you pursue civil action
[against your employer] in a federal court—you taking your employer to court and sue to have it
pay the claim. I always like to make sure people who are in that position understand that. Not
that they should or shouldn’t sue their employer; just that, you know—if you’re trying to get
$250,000 or $300,000 out of your employer for a stem cell transplant, you need to understand
that you’ll be suing your employer in order to do this. Many people get a little leery about that.
Be that as it may—[that’s what’s required].

I went ahead and included this piece just in case anybody decides they want to appeal. It gives
you a little bit of an idea of what to include in your appeal letter. You know—how do you ask for
one? How do you word it? Can you support what you’re asking for, or are you just going to say,
―I need this‖? What is your support? Again, avoid writing emotional appeals [to an insurer.
Unlike your employer, the insurer does not know you from Adam—and, at the end of the day,
the insurance company is a business, and it’s going to make its decision based on the bottom

Is anybody in the room uninsured? That is amazing; there is not one person in here that’s
uninsured. Wow. You are?

WOMAN: No … but I represent a clinic for the uninsured … There are a lot of—

TAMI LEWIS, RN, CCM: Yes, there are [millions of people in this country who are
uninsured]. What is it—48 million? It just keeps getting bigger … I hope that, with health care
reform, we’ll see that disappear. But right now it still is a very real problem.

If you’re uninsured—obviously, that’s not the case for most of you in here—but, in the event that
you [someday] find yourself without insurance, are you eligible for Medicaid or the Social
Security Disability Insurance program? How do you apply for those? We already talked a bit
about the SSDI—how you have to have been working and to have been paying into the Social
Security system for the five years preceding your application in order to be eligible for the SSA’s
disability program. SSA stands for Social Security Administration.

If you haven’t been working, the only thing you’re going to be eligible for is Supplemental
Security Income, or SSI. If you qualify for SSI, you qualify for Medicaid. SSI is a flat benefit; it
provides some ungodly, ridiculous amount, like $625 a month—something close to that. That’s
what the person is given to live on, period; that’s it. Can you imagine living on that? I mean,
good lord. At any rate, you have to apply for disability, and be deemed disabled, in order to
apply for Medicaid. [If you’re not deemed disabled, you’re not] eligible for Medicaid.
Now, especially if you’re collecting Social Security disability benefits, it’s possible that your
income will be too great for you to be eligible for Medicaid. Medicaid works off the federal
poverty level guidelines, or the FPLs. I haven’t seen the 2009 guidelines yet. Have they released
them yet?

WOMAN: They’re thinking about increasing it to 250 percent of the federal poverty guidelines
… They’re at 200 right now.

TAMI LEWIS, RN, CCM: Okay. And I think that, right now, the federal poverty guideline for
one person is [a maximum income of], like, $12,200 a year.

WOMAN: Closer to $20,000, actually. It’s gone up.

WOMAN: [Inaudible] household would be, like, $43,000 [for a] family with two kids.

TAMI LEWIS, RN, CCM: Okay. [Now,] what is a Medicaid share of cost? What is a Medicaid
spend-down? [Let’s talk about] the spend-down first. Medicaid spend-down means that typically,
in most states—I’m from Iowa, and I can tell you that Iowa has a higher asset limit—but
typically, in most states, the most you can have in assets is $2,000. Assets include pension plans,
401(k)s, 403(b)s, IRAs, CDs, stocks, bonds, savings accounts, checking accounts, and any
money that you can liquidate. Say you’re sailing along in life—you’re putting money into your
401(k), you’ve got an IRA over here, and you’re feeling really good and then, all of a sudden,
boom, you get hit with breast cancer, [it’s not enough that] you have to quit work and you no
longer have insurance; you will also have to lose all of your savings before you can qualify for
Medicaid. It’s really quite sad.

Here’s what I usually tell people in that situation, and this goes for anybody in the room who
ever finds herself or himself in that situation: because you [do get to keep] a house and one car,
cash out your 401(k) on a medical hardship and use it to pay off part of your mortgage or
essential household expenses. Maybe you can pay off your mortgage completely; maybe you
can’t. But do put a big chunk [of that money] into your house. I mean, don’t just blow it. Put it to
good use. Pay, in advance, the estimated amount of next year’s electric bills, water bills, gas
bills, cell phone bills, cable bills—whatever. Put it to work for you. Don’t just hand it to your
kids. I mean, obviously, you can do that if you want to. But, personally, that’s what I’d do—I’d
make sure that I got all my bills out of the way so that, if I was laid up for a while, there would
be very few bills that I’d be forced to pay at that time.

And, yeah, I’d come out of it looking not good because I’ll be financially bankrupt, basically.
But I’d have made sure I wasn’t going to lose my house, have my utilities shut off, and get sent
to collections. Also, especially in today’s society, many people have credit card debt that is just
astronomical. So that’s another thing—if you have credit card debt, get rid of it. Do whatever
you have to do. [Those are some ideas on how you can sensibly get rid of that cash so that you
qualify for the Medicaid] spend-down. [Editor’s Note: If you need advice on spending down
your cash in a way that makes sense and that will benefit you, consider talking with a financial
planner or a qualified attorney.]
Medicaid’s share of cost is similar to a co-pay or a deductible. The state will say, [for example,]
―Okay, you’re eligible for Medicaid; that will kick in once you’ve incurred $1,000 in charges
each month. At $1,001, we’ll start paying. But you’re responsible for the first thousand dollars
each month.‖ That’s your share of cost. And that [is a pretty accurate estimate of the actual]
amount [you’ll be expected to cover each month]. There are many cases in which a person
collects $1,200 a month in Social Security disability benefits and he or she has to cover $1,000 a
month in share of cost. It doesn’t make sense—that person is then supposed to live on $200?
Where do they come up with [these guidelines]? I don’t know. But that’s what that term means.

[Let’s talk about] how you apply for financial assistance and charity care and [the eligibility
requirements of such services]. One of the big things to keep in mind is that, if you’re uninsured
and your provider is treating you, the most important thing is that you’re getting the care. Worry
about how it’s going to get paid for [later]. [When you’re better and you do start thinking about
how you’re going to pay for the care you received,] you can apply for financial assistance,
charity care, or both. Has anybody ever heard of the Hill-Burton Act? That was passed way back
in the 1970s. Basically, it provides for hospitals across the country to be given X dollars each
year to treat uninsured people, and a hospital has to treat so many uninsured people a year in
order to remain eligible for those funds.

And there are other charity care programs — for example, back home we have a neuro institute.
The wife of one of the wealthy men of our state was diagnosed with MS. This man ended up
donating a chunk of change to the neuro institute for the purpose of treating the uninsured. So
those kinds of charity care funds [are available here and there] as well.

Care providers may offer financial assistance. Based on your income, they might agree to reduce
the bill by 50 percent, write it off completely or set up a reasonable payment plan for you.

Are you eligible for financial assistance? This is determined primarily by your income and
assets. If you’re making $350,000 a year, you’re not going to qualify for assistance. But if you’re
the average Joe Blow American, it’s highly probable that you will qualify for some piece of
something. The lower your income, of course, the higher the write-off. If you’re living at a
poverty level, you’re going to get 100-percent hardship.

In order to apply for Medicaid, you need to go to the Department of Health and Human Services,
speak with a representative, and let him or her know that you want to apply for state benefits. He
or she should be able to give you a list of other programs that you can also apply for—again,
depending upon your level of income—such as Section 8 housing vouchers, rental subsidy
assistance while you’re waiting to be approved for Section 8, and food stamps. There’s also
LIHEAP, or Low-Income Heating and Energy Assistance Programs, assistance. There are
programs to help with gas bills. Water—well, there are some programs to help with the water
bills. There are many different programs that a person can apply for in addition to Medicaid.

There are also [state-run] medical assistance programs for the ―medically needy‖ who don’t
qualify for straight Medicaid. [Eligibility for such a program is usually based on income and
medical status.]
Another thing: if you’re uninsured—and, again, I know that doesn’t really apply to the people in
this room, but—pharmaceutical companies have patient assistance programs. If someone is
uninsured, he or she can go to [the NeedyMeds website at] http://www.needymeds.com, look for
the medication he or she is taking, and apply for assistance. Again, that’s provided your income
is—I think [that, for these programs,] it might go up to about 500 percent of the federal poverty

WOMAN: [Inaudible]

TAMI LEWIS, RN, CCM: I’m not sure whether or not they look at assets as closely as the
Medicaid programs do. But, yeah—that’s often the way the uninsured get their medications.

The pharmaceutical companies’ patient assistance programs, or PAPs, also assist people who
find themselves in the Medicaid Part D doughnut hole.

Now, what do you do if you’re employed but your employer does not offer health insurance? …
Somebody over here said that her employer shut down. Was that you?

WOMAN: That’s my sister.

TAMI LEWIS, RN, CCM: Oh, okay.

WOMAN: [Inaudible]

WOMAN: Actually, I’m employed, but the employer doesn’t offer health insurance … I have
COBRA for, like, one more month … And then I’m hoping I can switch to my husband’s student
insurance. But he’s not staff or faculty at the university; he’s a student. I don’t think students
have the same insurance as the faculty does. I don’t know.

TAMI LEWIS, RN, CCM: What state do you live in?

WOMAN: Ohio.

TAMI LEWIS, RN, CCM: I’m not 100-percent positive that Ohio offers either guaranteed
issue or risk pool insurance, but what you’ll have to do, probably, is call up—you say you have
COBRA for one more month? When you get back, you need to call up the Ohio Department of
Insurance [http://www.insurance.ohio.gov/] … Ask for a list of policies. A representative may
walk you through them. Some [state department of insurance] websites list the policies for you,
and then you can review them online. You want to find guaranteed issue policies. Otherwise, are
you—you’ve been on COBRA for 18 months? Are you not working by choice or because you’re
unable to?

WOMAN: I am working now.

TAMI LEWIS, RN, CCM: Oh, that’s right.
WOMAN: But it’s considered interim work, so they don’t have to offer any benefits … even
though it’s a year; year-and-a-half job. But I’m not disabled or—

TAMI LEWIS, RN, CCM: That was what I was wondering—whether or not you could apply
for Social Security Disability Insurance and get Medicare.

[My advice is] to seek employment that offers employer-sponsored group health coverage,
because they’ll have to take you. The big key for you right now is—it sounds as though your
COBRA insurance is going to end at the end of this month? Or do you have it until the end of

WOMAN: Until about April 7; that first week of April.

TAMI LEWIS, RN, CCM: Okay. So the big thing for you is that you’re going to want to get
some other coverage in place before you hit that 63-days-or-greater lapse.

WOMAN: That’s why I’m hoping—I don’t know what his student insurance—we’re trying to
figure that out. I tried to look for other work.

WOMAN: I don’t know about all college student insurances, but recently I was on student
insurance at Northern Illinois University [http://www.niu.edu/]. I know that, to qualify for that, I
had to be taking a full load of classes. There, if you’re not considered a full-time student, you are
not eligible for the insurance. My guess is that most universities are like that. I don’t know if
they have a policy. But, just from the little bit that I know, I’m guessing you probably won’t
qualify. So I’d find out quickly, because you want to erase that right off your list if it’s not an

WOMAN: He’s a full-time student.

WOMAN: But that’s just him. He’s the student that they’re covering. Do you see what I’m

TAMI LEWIS, RN, CCM: I think she’s saying that, in order to be covered, insured, on the

WOMAN: You’d have to be a full-time student yourself.

TAMI LEWIS, RN, CCM: —you’d have to be a full-time student. I would definitely find out
whether or not he can [add] dependents [to his policy].

WOMAN: He’s a grad student; [he’s going for his] PhD. I think it might be different [for
undergraduates]. I don’t know.

WOMAN: I was getting my master’s … I was in a graduate program … But, like I said, I would
call and find out whether or not to just cross it off your list … Maybe you’ll get lucky.
TAMI LEWIS, RN, CCM: What if you want to be self-employed? One of the things to keep in
mind, if you want to be self-employed, is that you’re going to have to get individual coverage for
health insurance if you intend to have health insurance. Second, you’re going to have to make
sure that you pay into the Social Security Administration so that you’re eligible for Social
Security disability benefits in the event that you become ill. Those two things are going to be key
factors for you. Many self-employed individuals we talk to didn’t get insurance because, you
know, it takes a while to get the business up and running, [or they had insurance but at some
point] didn’t have the money to pay the premium, so they just let it lapse, and they didn’t pay
into the Social Security Administration because, you know, they didn’t have the money to do
that. [These people, who are now ill, are] looking at financial ruin.

What if your policy provides only minimal coverage—kind of like that catastrophic-only
[insurance] that I talked about—and you’re facing large out-of-pocket expenses? You have some
options there, depending on how large your out-of-pocket expenses are. If you’re looking at
$10,000 or $20,000—that’s a lot different than looking at $500,000 or $600,000.

WOMAN: Is that your only option if you’re self-employed—to get individual coverage?

TAMI LEWIS, RN, CCM: Some self-employed people belong to groups that offer insurance.
For example, some authors obtain insurance through a writers’ guild. It’s still individual
coverage, but they do it under a group … But typically [your only option is to get] an individual
policy [on your own].

WOMAN: And [inaudible] typically more expensive.

TAMI LEWIS, RN, CCM: Yes, very expensive.

WOMAN: Is that the same for small business owners who have just a few employees?

TAMI LEWIS, RN, CCM: No. Small business owners can get group health insurance. A small
business is going to be what’s considered a fully insured group, so the insurance company is
going to hold the financial liability, but the small business can get group health insurance
premiums. They’re usually fairly high, though, because there are not as many employees to
spread the cost of the claims.

WOMAN: Are they usually higher than the self—

TAMI LEWIS, RN, CCM: Oh, no. They’re usually cheaper. Any group plan is a lot cheaper
than an individual policy. Sometimes a person will call us and say, ―I’m being forced into
COBRA and it’s going to cost me $450 a month, and I can’t afford that.‖ [Our response is,] like,
―You can’t afford not to pay $450 a month—because your next option is an individual policy or
a risk pool, and [the premiums on those go into] four digits, so $450 a month is really not that
bad. Now, let’s see if we can find you [a program] that can help you pay those premiums.‖

MAN: Do the insurance companies usually require [small businesses to employ] a minimum
number of people in order to qualify for group health insurance?

TAMI LEWIS, RN, CCM: I want to say that [the minimum is oneself] plus one other person …
You’d have to [check with] an insurance company. But I’ve seen groups of as few as five people.

MAN: If they accept you.


WOMAN: What about a person with a history of cancer who starts a small business? Is it legal
for an insurer to deny you, or does it have to offer you insurance?

TAMI LEWIS, RN, CCM: If you’re applying for an individual policy?

WOMAN: No, a group policy.

TAMI LEWIS, RN, CCM: If you’re applying as a small-employer group?

WOMAN: Right.

TAMI LEWIS, RN, CCM: No. You have to be issued the policy. The insurer may hold your
preexisting condition against you for the first 12 months if you don’t [currently] have credible
coverage. But they would let you have the employer-sponsored health plan.

WOMAN: Can you get assistance that helps to pay COBRA premiums?

TAMI LEWIS, RN, CCM: The answer to that question is yes and no … and I tell you why.
Before [President] Obama signed the stimulus package into law, there were some places that
provided assistance with COBRA premiums, especially for those who were in active treatment.
Oftentimes, a state Medicaid program would agree to pay the COBRA premiums because it was
cost-effective—the state would rather pay $450 a month for your COBRA premium than pay for
your breast cancer treatment for the next nine months. So it was cheaper that way. There are also
some nonprofit foundations across the country that will help.

[At any rate,] that [Medicaid] money still going to be available, or are these still going to be
options? I don’t know. Now that there is legally mandated COBRA subsidization, in which
people, starting today, can get COBRA coverage at an out-of-pocket cost of 35 percent of the
cost of that premium, will those assistance programs still be there? I don’t know. We’re going to
have to see how things unfold. I would assume [that Medicaid will still be able to offer
assistance], but I don’t know.

WOMAN: [My husband is] working on the paperwork for that—and, apparently, something
applies, because he’s asking me to get letters from COBRA and the current insurance company
to say that I’ve been covered.

TAMI LEWIS, RN, CCM: Certificate of credible coverage.
WOMAN: Right.

TAMI LEWIS, RN, CCM: Your insurance company will not issue you that until the policy

WOMAN: That’s what I was wondering. [My husband] kept insisting that I have to have it in
order to get this insurance. And I said, ―Well, they‖—I tried to talk to them on the phone, but I
didn’t get anywhere.

TAMI LEWIS, RN, CCM: They will not issue a certificate of credible coverage until the policy
[is] actually [terminated] … And then they have to issue it within, I think, 45 days. But you
might be able to do to get around issue by copying your insurance card to show that have
insurance, as well as the effective date of your COBRA … That might help. [Also,] if it turns out
that [your husband] can sign you up as a dependent, that’s cool; go ahead and do that. You’ll run
into a little glitch during the first month or two that you’re covered—until you get the certificate
of credible coverage in. Your claims will either be denied or [set aside pending a review of
preexisting conditions.] But, once you get your certificate of credible coverage in, the insurer
will start to pay your claims just as it does anyone else’s.

WOMAN: Okay. I was also wondering—the thing I’m most worried about is [the issue of]
preexisting conditions. I wonder whether or not the ERISA regulations apply to—

TAMI LEWIS, RN, CCM: It’s the HIPAA regulations—ERISA applies to appeals; HIPAA
[deals with] the preexisting conditions.

WOMAN: And did [my husband and I did] figure out that, if it’s a state university—

TAMI LEWIS, RN, CCM: [Insurance carried by a] state university would self-funded, so it
would be regulated by ERISA. [The only three types of plans that are not regulated by ERISA
are those of] state governments, churches, and—I still can’t remember the third, but it’s not state

TAMI LEWIS, RN, CCM: I just want to [mention this] because I know that most, or some, of
you guys are breast cancer patients or you’re here as representatives for people with breast
cancer. We do have a co-pay relief program. The co-pay relief program operates in sort of the
same way as the patient assistance programs offered by pharmaceutical companies. We were
prompted to start a co-pay relief program because people who had insurance were saying, ―What
about me? I have all these hefty out-of-pocket expenses as a result of my drug co-pays and
there’s no assistance for me.‖ That’s what this is for—it’s for people who have private
prescription drug insurance. The insurance plan has to pay at least a dollar toward the cost of the
medication. Breast cancer is one of the program’s diagnostic silos. There is a whole list of them.
I didn’t—they change; we keep adding to the list. But breast cancer is definitely one of them.

Phone lines [are] open, [beginning] at 11:00 a.m. Eastern time, the first business day of each
month. That means, for example, that tomorrow morning at 11:00 a.m. our co-pay relief program
opens its lines to allocate funds for the month of March. The decision was made to divide the
total allocation amount for the year into 12 monthly installments; that way, a person wouldn’t
call on March 1 only to be told, ―Sorry, we’re out of funds; you’ll have to wait until January 1 of
next year‖—and what if you’re diagnosed in October? You’d be screwed. [At any rate,] once the
money is allocated, the lines shut down and you can’t apply again until the first business day of
the following month. You can also apply online [http://www.patientadvocate.org]—but, again,
only on the first business day of each month, beginning at 11:00 a.m. Eastern time.

WOMAN: I just have a deductible. Once I meet the deductible, my insurance plan covers
everything. So, if a co-pay isn’t required by your insurer—

TAMI LEWIS, RN, CCM: If you don’t have prescription drug co-pays, [you aren’t eligible for
assistance through this program].

WOMAN: I have two insurance policies. I have my work group insurance and I have my own
private policy, which I’d taken out before I had group insurance. Which one is my primary
insurance? I’ve heard a million different things. Is it the group insurance that is the primary

TAMI LEWIS, RN, CCM: Well, when I worked at Principal, we considered people with two
separate insurance policies ―dual covered,‖ and both policies would pay. If a claim is submitted,
both policies are subject to paying the claim; neither one is considered the ―primary‖ policy.

WOMAN: [Off microphone] No; they battle. I hate my individual policy, but I need to keep it
for—as soon as I can get rid of it, I will. But they deny everything, you know, and they’re like,
―It’s not us anymore. It’s not us. It’s not us.‖ I don’t know if there’s one solid answer as to which

TAMI LEWIS, RN, CCM: Well, the only thing [I can recommend is that you] contact the
department of insurance of the state in which the individual policy is underwritten … and ask the
representative which policy is the primary one, or if there is such a thing as a primary policy
when a person is dual covered. Oftentimes we’d come into contact with a person who had
employer-sponsored insurance as well as an individual policy; the person would submit claims to
both insurers, and [the individual insurance policy would] have an assignment of benefits, like
their employer one. The holder of the individual policy just sent the checks to the individual.
And [the person was] just making money off of it. You know, [the person was] paying [her]
claim every month, but when [she] submitted claims, both insurances were paying, and one of
[the insurance companies] was cutting checks to [her].

WOMAN: When you do get to the point that you know there’s an ERISA violation or that
there’s a violation of the Women’s [Health and] Cancer [Rights] Act [WHCRA:
www.cancer.org/docroot/MIT/content/MIT_3_2X.asp], what kind of attorney—what specialty
are you’re looking for, and who assumes the cost of that litigation?

TAMI LEWIS, RN, CCM: If it is an ERISA violation, you’re looking for a contract law
attorney. If it’s a WHCRA violation, probably—I think that we use our contract law attorneys for
that as well.

WOMAN: Do you know who assumes the cost of [litigation]?

TAMI LEWIS, RN, CCM: I think it depends upon what’s worked out with the attorney.
Sometimes an attorney who firmly believes that you’ve got a really good case may say, ―I’m not
going to charge you anything, but I want 20 percent of the settlement once it’s over.‖

WOMAN: But assume it pays your medical bills. How do you—

TAMI LEWIS, RN, CCM: Well, they’re probably going [to seek an amount that’s] more than
[the amount of] your medical bills.

GRETCHEN WALTON: If there are additional questions, you may just want to come up and
talk to Ms. Lewis. We have to close.

TAMI LEWIS, RN, CCM: Although I will tell you I can’t say for very long. I’ve got to make a
flight at 3:00.


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