From Tues NY Times:
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October 14, 1997
AIDS Drugs Elude the Grasp of Many Thousands of Poor
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In This Article Longer Lives For Some, No Benefits For Others
'Greyhound Therapy' And Red Tape's Toll
Related Articles U.S. AIDS Research in Poor Nations Raises an Outcry
(Sept. 18) Despite New AIDS Drugs, Many Still Lose the Battle (Aug.
22) Drug Combinations Are Changing the Outlook for AIDS (Jan. 19)
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By SHERYL GAY STOLBERG
MIAMI -- The doctor's chicken scratch is barely legible, but to Luis
Figueroa the scribbles on the little white slips of paper are precious.
They are prescriptions for powerful new AIDS medications that once
miraculously revived Figueroa, who was so close to death last year that
his parents brought in a priest in case he needed last rites.
But there is a problem with the prescriptions. Figueroa cannot afford to
fill them, and the government cannot afford to fill them for him.
The three-drug cocktail costs nearly $12,000 a year -- a sum that is
beyond the reach of Figueroa, an unemployed 33-year-old printer who
recently moved here from Washington, leaving his health insurance
behind. On a recent morning, he went looking for help at a social
service agency for people infected with HIV, but he found little solace.
There, a counselor told him that the federal-state partnership that pays
for AIDS drugs for the indigent was broke in Florida, as it is in 25
other states. It can pay for two of his antiviral medications, but not
for the protease inhibitor, the most powerful drug in his combination.
"It's a matter of waiting and hoping," the social worker, Gilberto
Robledo, said as Figueroa tapped his feet nervously on the floor.
Robledo told Figueroa that his name would be placed on a waiting list.
He did not tell him that the Florida list had 600 names.
So did Figueroa fall through the cracks of the AIDS drug revolution, and
he is hardly alone. It has been 18 months since protease inhibitors came
into widespread use in this country, helping to transform AIDS from a
death sentence to a chronic but treatable disease for many patients,
Figueroa included.
But the new drugs are expensive, and experts say tens of thousands of
people who could benefit from state-of-the-art AIDS therapy do not
receive it.
The reasons are varied. Some people with HIV do not seek treatment.
Others have yet to learn of combination therapy. And because the
protease-inhibitor regimen is complex -- up to 30 pills a day, some with
food, some without -- some doctors are purposely withholding the drugs
from unstable patients, fearing they will miss their doses and, as a
result, help the virus become resistant.
But as HIV continues to spread among the poor, experts say, the main
obstacle is increasingly money.
"I call it the therapeutic haves and the therapeutic have-nots," said
Dr. Arthur Ammann, president of the American Foundation for AIDS
Research. "Anybody who walks into a pharmacy in a poor neighborhood and
looks at the line of people who are trying to negotiate which drugs they
can or cannot get understands this."
LONGER LIVES FOR SOME, NO BENEFITS FOR OTHERS
The problem is generating a host of complex public policy issues as well
as anxiety for patients like Figueroa, who is hoping that his doctor
will persuade a drug company to give him the medicine free.
As word of the benefits of the new medications spreads, clinics are
jammed with patients who, imbued with a sense of hope, are eager for the
new drugs. Many are poor, and many have shunned treatment in the past.
At the same time, the fact that protease inhibitors have helped keep so
many people alive is depriving others of benefits.
Enrollment in the AIDS Drug Assistance Program, the federal-state
partnership that provides the drugs to the needy, has exploded with the
arrival of protease inhibitors. The rosters in some state have climbed
as much as 2,000 percent, said Richard Jefferys of the AIDS Data
Treatment Network, an advocacy group in New York.
And as patients live longer, there is barely any turnover in the
program. In many parts of the country, precious slots are full, and
state officials, short of cash, are faced with a wrenching problem:
whether to cover all the drugs for some patients or some drugs for all.
"People are not dying as rapidly, so they are not opening up spaces,"
said Dr. Patricia Hawkins of the Whitman-Walker Clinic in Washington,
which treats and counsels people with AIDS. "There is so much hope in
these medications, and then you have to tell people they can't get on it
yet. It's very frustrating."
The problem is particularly acute in Florida, the state with the
third-highest AIDS caseload, after New York and California. As Figueroa
tries to remain calm -- "If I worry, I get stressed, and it's no good
for me," he said -- he knows that the longer he goes without his
medicine, the worse his condition is likely to become.
Other patients are growing angry.
"I feel stuck," said Mica Paris, 28, who is also on the Florida waiting
list. She was tested for HIV as part of an outreach program run by the
Health Crisis Network, the same agency where Figueroa sought assistance.
Medicaid turned her down, and she says she has no money to fill her
prescription.
"The whole purpose of me getting tested was to get treatment and help,"
Ms. Paris said. "I guess I'm not going to get help until I'm damn near
dead."
According to the Federal Centers for Disease Control and Prevention,
750,000 Americans are infected with HIV, and fewer than 1 in 5 of them
have private health insurance. Roughly half are insured by Medicaid or
other government programs, but 29 percent have no insurance at all.
'GREYHOUND THERAPY' AND RED TAPE'S TOLL
Access to the drugs varies from state to state and even from county to
county, contributing to what one expert called "Greyhound therapy," a
tendency of some patients to move to where the drugs are.
If a patient and his doctor are aggressive, experts say, they can
generally find a way to get the protease inhibitors through a patchwork
of government assistance, clinical trials or, as a last resort, the
pharmaceutical industry, which donates drugs through its "compassionate
use" programs.
But sometimes the red tape proves overwhelming, and patients give up.
At the same time, drug companies, which say the high prices are
necessary to recover millions of dollars that they are spending on
research, are themselves feeling squeezed. They are inundated with
requests from doctors and even state governments for free medicine.
The North Carolina drug program, for instance, closed to new patients at
the beginning of October. And the Colorado program will run out of money
in December, three months before the end of its fiscal year; after that,
Colorado will ask drug companies to pick up the cost of medications for
the 720 patients enrolled.
"We need to bear in mind that there are limits," said Joy Schmitt, a
spokesman for Agouron Pharmaceuticals, which makes nelfinavir, a
protease inhibitor. Another manufacturer, Hoffmann-LaRoche, has closed
its compassionate use program to patients in Florida, in an effort to
press the state to pay for more.
"The state was zapping so many resources," said a Hoffmann-LaRoche
spokesman, Jeff Winton,that "some of the other states weren't able to
put their patients in."
The Clinton administration is considering a pilot program to expand
Medicaid so that additional people with HIV can get the drugs. Medicaid
covers the protease inhibitors, but at present only people who are
disabled by AIDS are eligible.
That policy flies in the face of what doctors know about the drug
cocktails -- that patients benefit the most when they begin taking them
in the early stages of the disease.
"You've got to get yourself really sick so you can qualify to be totally
disabled so you can get the medicine that might have been able to save
you," said Hawkins, of the Whitman-Walker Clinic in Washington. "It's a
crazy system."
It was into this bureaucratic netherworld that Figueroa plunged when he
decided over the summer to leave Washington for a warmer region. His
predicament illustrates the stresses that uninsured, often desperately
ill patients face as they struggle to get medications.
Figueroa, who was born in Honduras, immigrated to the United States with
his parents 11 years ago and worked as a printer. In 1989, he found out
that he was HIV-positive. His employer covered his medical care.
But in 1995 he developed AIDS-related pneumonia and had to quit his job.
He has no idea whether he is eligible for Medicaid; he says he never
realized that he could apply.
Instead, he sought help from a friend who owned a business and who
included Figueroa in the company's insurance plan, as an employee.
Looking back, Figueroa acknowledges that the arrangement was not quite
legitimate, and says he was never comfortable with it. But he was
desperate.
By February 1996, the normally stocky young man was thin and wasting
away. His count of T cells, which are crucial to fighting off infection,
had fallen to 7. A normal count is more than 500.
He did not have the strength to rise from his bed to go to the bathroom.
Thrush, a yeast infection, coated his throat, making it impossible for
him to eat. "Basically," Figueroa said, "I was dying."
Then indinavir, a new protease inhibitor manufactured by Merck & Co.,
was approved by the Food and Drug Administration. His doctor prescribed
the drug in a cocktail with two other antiretroviral medications, and
before long Figueroa had become another AIDS miracle, one of legions of
patients whose health was seemingly restored by protease inhibitors.
His viral load dropped to 4,000 copies per cubic milliliter of blood,
from 49,000. But by this summer, after he had spent more than a year on
the drug, the numbers had started creeping up again.
It was about this time that Figueroa decided to move. The decision to
give up his health insurance was not easy, but he feared another cold
winter in Washington. He knew of patients who were receiving their
medicine through government programs, and he thought he could do the
same.
Had he moved to New York or California, he might have had an easier
time. Those states, with the largest AIDS caseloads in the nation, have
vastly increased their contributions to the AIDS Drug Assistance Program
to cover all poor patients.
But Florida, which this year received $27 million in federal money for
the program, has not been so generous: the state contributes $2 million,
while state health officials estimate the need at $12 million.
As a result, said Thomas Liberti, who runs the AIDS program at the State
Health Department, Florida recently capped enrollment. Those who are
already receiving the protease inhibitors may continue, but no new
patients are being added.
"All you have to do is look at the math," Liberti said, "to know that we
don't have enough money to go around."
That was a surprise to Figueroa, but it is no surprise to the doctors at
the AIDS clinic at South Shore Hospital, the small community hospital in
South Beach where he is being treated. About 85 percent of all the
patients there lack health insurance. The federal government pays their
medical bills with money from the Ryan White Care Act.
Most South Shore patients in combination therapies receive their drugs
free from pharmaceutical companies, said Dr. Jose Hernandez, who treats
Figueroa. But getting approval takes time.
"The patient has to go see his case manager," Hernandez said. "The case
manager fills out the report. It comes back to me. I fill out my part. I
give it back to the case manager. I'm writing prescriptions that I know
are not going to be immediately filled."
Although his doctor is optimistic that he will eventually get the drugs,
Figueroa is growing weary of the wait. It has been nearly a month since
he picked up his prescriptions.
When he visited Robledo at the Health Crisis Network in late September,
Figueroa says, he expected to receive his medication right away. He left
three hours later empty-handed, with instructions to ask his doctor for
a copy of the test showing his viral load -- the HIV level -- and a
letter explaining the need for the medicine.
"It's a runaround situation," Robledo acknowledged, "a back-and-forth
kind of thing."
Early in October, Figueroa returned. He came away discouraged. He was
not feeling well, he said, and was starting to worry about his health.
"Gilberto tried to help me," Figueroa said, "but we just filled out more
forms. I have a cold, and I can't sleep thinking about all these
things."
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