By John S. James
AIDS Treatment News
A combination of unrelated events and changes in the last two
years is increasingly threatening the ability of thousands of
Americans with HIV to get medically necessary care.
The national economic slowdown, a crisis in state budgets, the
Federal focus on war, and the neglect of treatment-access
activism, have combined so that probably thousands of people
are being denied necessary treatment for economic reasons
alone, when they would have had access a year ago.
The problem is likely to get much worse before it gets better.
While most of the causes are beyond the control of readers of
AIDS Treatment News, we can work on the activism.
Few patients are immune to these problems. Due to high prices
for drugs and tests, very few can pay the full cost of HIV
care entirely out of pocket.
And private insurance has become
increasingly efficient at getting rid of people with
expensive illnesses -- especially HIV infection, since it is
not officially recognized as a medical specialty like cancer,
even though it is one in fact.
Therefore HMOs can pay HIV
doctors the "healthy adult" rate, less than the cost of
providing care, in order to drive good doctors out of the
plan and keep patients away.
(1) As this issue goes to press, there may or may not be an
emergency mobilization on ADAP (the AIDS Drug Assistance
Program, funded by the Ryan White CARE Act), in the coming
days or weeks. The growing crisis in ADAP results from flat
Federal funding despite increasing needs, rising drug prices,
state budget shortfalls, and indirectly from increasing
Medicaid problems. Also, the traditional coalition of patient
advocates and industry to seek funding for ADAP has not been
very active in the last year.
(2) Medicaid is a huge program that has surprisingly little
advocacy for it, either in AIDS or otherwise. Many people
think of Medicaid as a program only for the poor -- not
realizing that it also pays for their own grandparent in a
nursing home. Medicaid provides for many more HIV patients
than ADAP, and pays for more of their medical care instead of
just drugs.
After hearing from people who are having more and
more serious problems obtaining HIV care under Medicaid in
many states, activist Kate Krauss looked into the program and
wrote the background article below for AIDS Treatment News.
She is also researching the ADAP crisis -- and how people can
help with both programs -- for a future article for this
newsletter.
Medicaid Funding Cuts
Affect People with AIDS Across the U.S.
By Kate Krauss
[The first of two articles on the crisis in public benefits
for people with HIV/AIDS.]
It is not commonly known that the Medicaid program (MediCal
in California) is the single biggest source of publicly
funded AIDS treatment in the United States -- bigger than
Medicare and bigger than the Ryan White Care Act. Medicaid
spent $6.9 billion on people with AIDS in Fiscal Year
2001(1), more than three times as much as all titles of Ryan
White.(2) The program provided health care, including
prescription drug coverage, for roughly 260,000 low-income
and disabled people with HIV/AIDS during 2001(3); for
comparison, the AIDS Drug Assistance Program served about
140,000.(4)
In the mid-to-late 1990s, many states, buoyed by increased
revenues brought on by the economic boom, expanding Medicaid
eligibility criteria for children, the elderly, the disabled
and other groups.(5) But by early 2001, the economy had
drifted into recession and states were struggling to pay
their Medicaid bills with diminishing resources. Since then,
many have reduced patient eligibility, limited prescriptions,
and cut services at a time when programs like the AIDS Drug
Assistance Program are also stretched to the breaking point.
"I can't think of one state that isn't having problems,"
commented Neva Kaye of the National Academy for State Health
Policy. "There's a reason for the expansions in the past few
years - Medicaid programs saw a need. They don't want to step
back, but there is only so much money in the system."
In a recent survey by the National Conference of State
Legislatures, Medicaid was the number one program named as
being over budget: 27 states and the District of Columbia
reported Medicaid cost overruns, with four others indicating
concern about Medicaid spending.(6) It is usually the second
biggest state expenditure after education, and many states
are required by law to balance their budgets.
People with AIDS from Massachusetts to Oklahoma have been
affected by the cuts. Some of the hardest hit are sick PWAs
who require intensive medical care and numerous prescription
drugs but are least able to muster the resources they need to
get them. For instance, the Florida Medicaid program has
instituted a cap of four brand-name prescriptions per month,
with a time-consuming appeals process for patients who must
override the cap to receive important medications.(7)
Although HIV drugs are theoretically exempt from this limit,
newly approved antiretroviral drugs are often kicked out of
the computer -- and some pharmacists are not even aware of
the HIV rule. Other states are also exploring drastic
measures: in South Carolina, legislators are considering a
bill that would require Medicaid beneficiaries to reapply to
the program every six months.(8)
A Culprit: Skyrocketing Prescription Costs
According to independently funded public policy analysts, the
most important factor in the Medicaid budget shortfall is the
rapidly escalating price of prescription drugs. Medicaid drug
spending grew 18.1% per year between 1997 and 2000, more than
twice the overall growth of the program.(9) Meanwhile, a
recent FORTUNE 500 report named the US pharmaceutical
industry as the most profitable in the U.S: industrywide,
profits were also running $18.5% in 2001. In comparison,
Medicaid enrollment is nearly stagnant: the number of
enrollees increased less than 5% between 1999 to 2001, from
42 million to 44 million(10).
Unlike Ryan White money, which is distributed through a
system of formulas, Medicaid funding is keyed to the amount
of money a state elects to spend on the program. State funds
are matched at least 1:1 by federal dollars.(11) As a result,
some states have well-funded programs, while poorer states --
or states where Medicaid spending is not a high priority --
do not.
The Medicaid program also suffers from anonymity: citizens
are only dimly aware of what it is, exactly, and whom it
serves. Few people realize that nearly half of Medicaid
beneficiaries are children--and that at least 55% of all the
people with AIDS in the United States are on Medicaid. Among
other groups, the program serves many formerly middle class
men with AIDS (and some women) who have spent down their
assets in order to qualify for health coverage.
Without a visible constituency, Medicaid recipients are
especially vulnerable when it comes time to make state budget
decisions. There are no national groups for Medicaid AIDS
advocates, and few state advocates at all for people with
AIDS -- even though a key to better AIDS care nationwide lies
in pushing state legislatures to adequately fund the program
and pull down federal matching funds.
A Florida Example
In the current recession, the number of people who need
Medicaid is increasing just as revenues to support it are
drying up. The state of Florida typifies this phenomenon: the
state is facing enormous budget shortfalls while its
prescription drug costs have skyrocketed.
Michael Barry, a 42 year-old PWA living in Titusville,
Florida, had to fight for months to obtain his medications
because of the state's prescription cap. Barry, who tested
HIV-positive in 1985, has a CD4 count of only 7, suffers from
severe opportunistic infections, and requires more than two
dozen different medications. His physician prescribed Valcyte
for CMV, Kaletra for his HIV, and Neupogen to boost his white
blood cell count. The state rejected his prescriptions for
all three.
His physician, Gerald Pierone, M.D., also spent months
pushing the state to approve these medications. Finally
Barry, who lives on a $604 disability benefit, was forced to
hire a disability lawyer to press his case at a formal
appeal. As the appeal dragged on, he went without Neupogen
for three weeks. He eventually won the appeal and received
the drugs, but must reapply for them again in six months.
Barry says that some of his friends are getting sick without
medications because they don't have the energy to obtain them
under Florida's Medicaid system. "If you don't fight, you
die," he says.
Pierone concurs. "Some of my patients who need Neupogen have
gone through lapses that can potentially threaten their
health. I have had to keep patients in the hospital for two
or three days until the state approved their Valcyte
prescriptions. If I have a sick person with AIDS on ten
different drugs, many of them will be brand-name and we will
have to make dozens of phone calls to get them approved -- if
they are approved. Ultimately, the patients who have it
together will call us when they are denied a medication. The
ones who aren't as sophisticated just do without -- we may
not find out about it for two or three months."
With nearly every state affected, the health of some 260,000
low-income people with AIDS is at risk. Every day, thousands
of vulnerable people are trying to wade through paperwork and
overcome new obstacles to obtain basic medical care.
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At the same time, thousands more do not qualify for Medicaid
at all: the program only covers people with an AIDS
diagnosis. One solution to this problem may be the Early
Treatment for HIV Act, which would make people who are HIV-
positive eligible for Medicaid if they meet their state's
income requirements. The bill would provide a stable source
of medical care to many thousands of people and would relieve
pressure on Ryan White programs.
Barry urges other people with AIDS to lobby on behalf of
increased AIDS funding. "If you have to, go to Washington and
fight for your rights. And vote for politicians who support
people with AIDS." Barry recently returned from a trip to
Washington, DC where he visited members of Congress to
advocate for more AIDS funding for Florida.
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Related Stories from the GayToday Archive:
Improving AIDS Activism
Little Known Drugs: New Kinds of Treatment
Resistence to HIV Drugs: Data and Spin
Related Sites:
AIDS Treatment News
GayToday does not endorse related sites.
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Information Resources
The Kaiser Family Foundation publishes detailed, reliable
reports on HIV, Medicaid, the uninsured, and prescription drug
coverage (including the AIDS Drug Assistance Program). Recent
publications on Medicaid and prescription drugs can be accessed
at: http://www.kff.org/content/2002/20020213/
Fact Sheet on Medicaid and AIDS: http://www.hcfa.gov/medicaid/obs11.htm
Families USA While not AIDS-specific, Families USA has issued
a number of useful Medicaid reports and created advocacy tools
such as this state advocate's kit for lowering prescription
drug prices: http://www.familiesusa.org/html/drugkit/drugkit.htm
Early Treatment for HIV Act. For more information, contact
Ryan Clary at Project Inform, 415-558-8669, ext. 224 or email
him: tan@projectinform.org. (You can find an archive of past
action alerts at http://www.projectinform.org/news/index.html,
but it's more important is to get on the list for current alerts,
because you often need to respond very quickly. Ask to receive
regular action alerts and other information on this bill.)
Prescription Access Litigation. "This initiative targets
the illegal activities of pharmaceutical companies that artificially
inflate the price of prescription drugs. PAL is a coalition
of over 75 consumer and public interest organizations from 30
states." http://www.prescriptionaccesslitigation.org/
References
1. Report by Wayne Ferguson, Office of the Actuary, Health
Care Financing Administration (now the Centers for Medicare
and Medicaid Services), April 30, 2001.
2. Claude Franklin, Executive Officer HIV/AIDS Programs,
Health Resources Services Administration.
3. Center for Medicaid and State Operations, Division of
Advocacy and Special Issues. Number includes people who are
HIV-positive but do not have an AIDS diagnosis who are
enrolled in Medicaid due to a disability apart from HIV.
4. ADAP Monitoring Project. The Henry J. Kaiser Family Foundation (KFF) commissions
the National ADAP Monitoring Project and conducts it in partnership
with the National Alliance of State and Territorial AIDS Directors
(NASTAD) and the AIDS Treatment Data Network (ATDN): http://www.atdn.org/access/adap/
5. Kaiser Commission on Medicaid and the Uninsured, March 2002. "Medicaid and
State Budgets: An Overview of Five States' Experiences in 2001":
http://www.kff.org/content/2002/4039/4039.pdf
6. State Fiscal Update, April 2002, by the Fiscal Affairs Program of the National
Conference of State Legislatures. http://www.ncsl.org/
7. Jerry Wells, Pharmacy Program Manager, Florida Medicaid
Program.
8. Republican-sponsored bill being considered in the South Carolina legislature,
H 4955: http://www.lpitr.state.sc.us/bills/4955.htm
9. "States Strive to Limit Medicaid Expenditures for Prescribed Drugs," Kaiser
Family Foundation Study, February, 2002: http://www.kff.org/content/2002/20020213/4030.pdf
10. United States Congressional Budget Office.
11. "Federal Medical Assistance Percentages and Enhanced Federal Medical Assistance
Percentages," Effective October 1, 2002 - September 30, 2003
(Fiscal Year 2003): http://aspe.os.dhhs.gov/health/fmap03.htm
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