Pubdate: Tue, 05 Jun 2007
Source: New York Times (NY)
Copyright: 2007 The New York Times Company
Contact:  http://www.nytimes.com/
Details: http://www.mapinc.org/media/298
Author: Erik Eckholm

PUERTO RICO'S AIDS CARE IN DISARRAY OVER FUNDS

SAN JUAN, P.R. -- His emaciated body advertises the damage wreaked by
the AIDS virus. But over the last year, Rolando Warren Gonzalez, 41, a
former steel band member, has faced an extra challenge to his survival.

 From the shelter where he lives in Loiza in Puerto Rico's
impoverished northeast, Mr. Gonzalez travels an hour and a half by bus
to reach the government clinic where he receives his "cocktail" of
antiviral drugs.

"But sometimes I go, and they just don't have the medicines," he
said.

Six times in the last year, he said, he has suffered two-week periods
with no drugs, undercutting the life-prolonging benefits of modern
therapies against H.I.V., the AIDS virus.

Accounts like his -- and worse -- are repeated across this tropical
territory of the United States, where hundreds of H.I.V. and AIDS
patients are not receiving vital medical care, say a host of doctors,
community groups and patients.

The disarray in treatment reflects a stew of problems. An
overstretched health care budget is accentuated by rivalries between
the commonwealth and the San Juan city governments, which run separate
AIDS programs.

But federal officials and many local doctors say the main culprit is
the island's poor management of the available money provided for AIDS
care under the Ryan White Act, amounting to $53 million last year.
Clinics have not received drugs on time, and private groups that
assist AIDS patients are often reimbursed six months late or more,
causing some to cut services or even shut down.

In sharp rebukes to the Puerto Rico Health Department and the City of
San Juan, federal officials have put the AIDS grants under unusually
tight review and even threatened to halt some federal money. Because
of disorganization, the officials say, the island has often failed to
spend all its Ryan White aid, losing access to $6.5 million over the
last five years.

Adding questions, in December the F.B.I. raided four San Juan Health
Department offices, seizing 400 boxes of documents in a criminal
investigation into possible misuse of Ryan White grants.

Officials here deny misusing funds. They did have to establish a
waiting list for new patients needing drug treatment in the fall, but
say that any lapses in care have been brief and that their main worry,
in an era when treating a single AIDS patient can cost more than
$25,000 a year, is a shortage of money.

At a time when patients live longer and drug costs soar, the challenge
is daunting. But doctors and patients here say the government has made
poor use of its money. "The state of H.I.V. treatment here is a
catastrophe," said Dr. Jose Varga Vidot, director of Community
Initiative, a private group in San Juan that provides primary care to
1,600 patients including drug addicts, prostitutes and homeless people.

Dr. Varga Vidot said he knew of at least 75 people who were unable to
obtain all their drugs from government clinics for up to a month.

In relation to its population of 3.9 million, Puerto Rico has the
fifth-highest concentration of AIDS cases of states and territories,
with 12,000 patients and estimates that as many more are infected with
H.I.V. but are not yet ill.

About half the patients were infected from shared heroin needles,
posing special challenges because many are isolated and penniless.

Although no studies have tried to link the spotty care with mortality,
according to the latest comparative national data, 580 patients died
here in 2003, indicating a mortality rate higher than that in states
like New York known for good AIDS care.

A majority of H.I.V. and AIDS patients are covered by the Puerto Rican
version of Medicaid, known as Health Reform. That financially
struggling program does not cover some crucial drugs. The $53 million
provided under the Ryan White law is supposed to fill the gaps.

As a territory, "we don't get what we need," said Health Secretary
Rosa Perez-Perdomo.

Federal aid to the Medicaid program here is capped at $240 million,
meeting 13 percent of the overall budget, Dr. Perez-Perdomo said. On
the mainland, poorer states receive up to 75 percent of their Medicaid
money from Washington, giving them more leeway in treating low-income
AIDS patients.

Advocates for AIDS treatment in the United States, where the disease
is increasingly concentrated among blacks and Hispanics, juxtapose
President Bush's new call for $30 billion to expand AIDS care abroad,
a politically popular cause, with the stagnant financing of the Ryan
White program for needy Americans. That has remained around $2.1
billion for four years.

"At a time of rising needs at home, especially among minorities,
Puerto Rico and the states all have to compete for flat Ryan White
funds," said Dennis DeLeon, director of the Latino Commission on AIDS
in New York.

The advocates say Washington should do more to reshape a dysfunctional
care system on the island.

The Health Resources and Services Administration, which administers
the Ryan White money, has repeatedly pushed for streamlining the
crushing bureaucracy here and sent many advisers, said Dr. Laura
Cheever, deputy associate administrator at the agency.

The F.B.I. raid, on Dec. 12, was part of an investigation into the
misuse of Ryan White money that San Juan had received for its use and
for 30 nearby municipalities, said a spokesman for the agency here,
Harry Rodriguez. In 2006, the city received $13 million.

Even patients receiving top-quality care have to struggle with the
disease, because H.I.V. can develop resistance, making patients switch
to new, costlier drugs.

Gaps in treatment can hasten the development of resistance. Doctors
here also say that when they need to switch an ailing patient to a new
regimen, approval from the central health department can take months
and that the latest drugs are often not available.

Angelica Segarra runs the shelter for homeless AIDS patients where Mr.
Gonzalez stays, a rambling house in Loiza. Ms. Segarra said that she
provided medicines to 60 people before recent cuts in financing by San
Juan forced her to stop and that many patients have searched in vain
for clinics taking new patients.

One patient, Luis Torres, 42, was unable to secure medicines for three
months. Another resident, Miguel Vasquez, 44, split his drugs with Mr.
Torres because, he said, "it seemed like the right thing to do."

In March and April, each took half the proper dose until the supply
ran out. "Now I've had a month with no cocktail and I'm worried," Mr.
Vasquez said.

Cash shortages or errors in drug distribution by the commonwealth
Health Department mean that patients sometimes receive five days'
doses at a time or two antivirals instead of the prescribed three, a
practice that can do more harm than good.

The main San Juan AIDS clinic, one of the better equipped, serves
2,254 patients. Since late 2006, it has stopped accepting new ones,
saying it cannot afford more.

One problem is jurisdictional rivalries. Dr. Hector Sorentini Mendez,
health director of San Juan, said the commonwealth had refused to
share its federal grants, $22 million under the AIDS Drug Assistance
Program, which pays for otherwise uncovered medicines under the Ryan
White law.

Sandra Molinias Rabe, 33, a former heroin addict in the mountains
southwest of San Juan, is one of many cases who have slipped through
the cracks. Ms. Rabe lives with her partner, Raymond Quinones, in a
squalid shack without running water, reached by an arduous climb up
overgrown steps. A neighbor allows them to carry up buckets of water
and run an electricity line to power a light bulb.

Her medical condition is poor, and the doctor at Casa Joven del
Caribe, an aid group, said she needed new laboratory tests to see
whether she should switch medications. The aid group, which is in a
dispute with San Juan over late disbursements, can no longer pay for
her tests and drugs and sent her to an assigned Medicaid doctor in
another town. That doctor said she would have to return in two weeks.
In the meantime, she had no medicines. Antiquated equipment and poor
communications have added to the problems. An audit by the comptroller
of Puerto Rico published in November found that the Health Department
records of drug stocks and deliveries to outlying clinics were grossly
deficient, allowing mistakes and medicines to expire. Four of the
eight main H.I.V. clinics lacked working bathrooms or computers,
another report said in the fall.

Hector Figueroa, who directs a drug treatment program in Caguas, south
of San Juan, said changes in federal priorities and a lack of action
by the Puerto Rico government had led to sharp cuts in transportation
aid and substance abuse treatment. At the two clinics in his region,
Mr. Figueroa said, patients sometimes receive 15 days' medicines in a
month.

The Health Resources and Services Administration, citing problems in
administration, patient access, and community participation, put the
San Juan government on "restricted drawdown" status in 2005 and did
the same for the commonwealth in 2006. The health agencies now have to
submit all grant vouchers to Washington for approval before money is
disbursed.

Puerto Rico officials say the waiting list for drug assistance has
declined, to 36 from 130 in the fall, and will soon be eliminated. A
local group, AIDS Patients for a Sane Policy, said that its survey of
clinics found 477 patients waiting to start therapy or to make
necessary changes in their drug regimens.

For a year, Puerto Rican and mainland groups, including the
Congressional Hispanic Caucus, have called on federal authorities to
take stronger action here.

In a letter to Michael O. Leavitt, secretary of health and human
services, Senator Tom Coburn, Republican of Oklahoma, has said he was
"gravely concerned about the ongoing crisis taking place in Puerto
Rico."

In another letter, Senator Hillary Rodham Clinton, Democrat of New
York, said mismanagement had "severely curtailed access to
life-extending treatment" and called on the health administration to
strengthen its oversight of Ryan White programs on Puerto Rico.

Administration officials said that they had proposed transferring San
Juan's Ryan White funds to a separate entity that would manage them,
but that Mayor Jorge A. Santini Padilla had refused.

"In the end," Dr. Cheever of the health administration said, "It's up
to them to do the planning, allocations and administration, and what
we can do in terms of sanctions is very limited by legislation."
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MAP posted-by: Richard Lake