When George arrived at the ExcelTh Central City Pharmacy on July 10 to pick up his AIDS medication, he was hit with a shocking, and potentially lethal, refusal.
The pharmacist told George she could not fill the prescription because the funding for the medication had run dry. George, who requested that we not publish his last name because his family doesn't know he has AIDS, receives medicine funded by federal dollars, a situation that gives AIDS sufferers access to drugs they could not otherwise afford. His regular pick-up from ExcelTh was his sole source of treatment.
George says he faults the city government for not funneling federal dollars to local health and welfare agencies, resulting in the unavailability of his medicine. "We die," George says bitterly, "and New Orleans gets rid of its problem."
In fact, during about a week's time in mid-July, possibly dozens of AIDS patients faced George's predicament. ExcelTh was treating 79 patients in June, but some received medication monthly; exact numbers of patients affected were not available by press time. Now, providers and patients alike are asking: Why did this happen?
There are more accusations than explanations; the situation has exposed an alarming case of infighting among local AIDS care providers.
ExcelTh blames a breakdown in the cost-reimbursement system and an overload of clients during a time of budget cuts. "We temporarily ran out of funding and exhausted our budget," says CEO Michael Andry, adding that ExcelTh didn't know its supplier had cut off the medicine until the day George arrived at the pharmacy. "Each provider in this program must make a business decision on how far and how long they will go into debt."
Both the city and the activist group NO/AIDS Task Force counter that ExcelTh is suffering from poor financial management, having gone through its annual budget in just four months. The city also denies that a default in its funding is somehow responsible for the shortage of medication at ExcelTh's Central City pharmacy. "That is simply not the case," says Angela Shiloh-Cryer, director of the Mayor's Office of Health Policy.
The funding in question is the federal Ryan White program, named for an Indiana child who was diagnosed with AIDS at age 13. Ryan White dollars provide funding to cities to support various AIDS-related services. How that money is spent in New Orleans and the seven-parish metropolitan area is determined by the New Orleans Regional AIDS Planning Council, with exact amounts and agencies designated by the Mayor's Office of Health Policy and approved by the mayor.
Nationally, New Orleans ranks 13th among cities with the greatest needs assessment in the program, according to Shiloh-Cryer. The program allotted New Orleans $7 million for the 2001 fiscal year, Shiloh-Cryer says, a figure that represents an increase of $1 million over 2000 funding.
In addition to drug costs, the Ryan White program funds food banks, mental health services, primary medical care and individual case management. Ryan White Title I marks the division of funding set aside exclusively for providing assistance to the needy (patients earning less than $34,000) in obtaining expensive AIDS medication.
Service agencies wanting to participate in the program must submit grant proposals for review to the Office of Health Policy to receive funding for the fiscal year, which for the current year runs from March 1 to Feb. 28, 2002. If approved by the office, the grant proposal must then be approved by the mayor. The funding the service agencies receive, Shiloh-Cryer says, is designed to last the entire 12-month grant period.
ExcelTh CEO Andry blames his company's shortfall in part on the city's decision to add additional participating agencies to the Ryan White program. This year, the city added United Services for AIDS and NO/AIDS Task Force to the list of funding recipients, which previously was limited to the two ExcelTh locations (Central City and Desire Street) and the HIV Outpatient Clinic at University Hospital.
"We knew we were running out of money," says Andry. "But the decision this year to split the funding among four agencies left us with less than one-third of what we had last year. And while the new programs were getting started, we bore the full load of providing services in March. Compound that with factors of the cost of medications rising, the increase in the number or clients, the number of medicines and clients now living longer. But, we know the city is not a bottomless pit of federal funding. It's a complex issue."
Andry says ExcelTh was funded with $200,000 for 2001 to cover all expenses, not just drug costs -- one-third of last year's budget of $600,000. ExcelTh spent the majority of its money in March, during which the pharmacies serviced 145 clients, a number that dwindled to 79 in June as the other agencies began to absorb more clients. Andry adds that ExcelTh has yet to be reimbursed for any expenses in the fiscal year beginning March 1, a process he says takes anywhere from a minimum of six weeks to several months. He says he submitted a letter to Shiloh-Cryer on July 10 for additional funding of $162,000 and hopes it will be provided from carry-over funds unspent in the Planning Council's 2000 budget.
This request for additional funding, however, is news to Amanda Hammack, manager of the 31-member Planning Council. Saying she "definitely should have heard about this," Hammack acknowledges "a ballpark figure" between $600,000 to $700,000 existing in the budget that was carried over. That money must be spent during 2001 or it will be returned to U.S. Health Resources Services Administration, where the federal funding originates, she says.
George can't miss just one day's dose of the "AIDS cocktail," a combination of three different drugs taken three times daily with a synergy proven most effective against the virus. If George misses his dosing, it jeopardizes his fragile health. Diagnosed in October 1981 with AIDS before the name existed (the disease was then labeled GRIDS -- Gay Related Immune Deficiency Syndrome), George also developed heart problems and diabetes; he says his health has stabilized in recent years with the advent of the AIDS cocktail strategy, also known as the highly active anti-retroviral therapy (HAART).
The U.S. Food and Drug Administration cites numerous studies showing that even a slight lapse from the HAART regimen -- the most effective treatment of AIDS that currently exists -- can cause the AIDS virus to increase in severity. If this happens, formerly effective drugs can prove useless.
Andry says that both ExcelTh pharmacies were without AIDS medication "for about a week," with the Desire location restocked on July 13, and Central City three days later. But he adds that patients' case managers quickly transferred ExcelTh clients to another pharmacy. "It's not like they didn't receive medication at all," he says. "It takes a day or two to be transferred. Most of our clients shouldn't have had additional problems."
Noel Twilbeck, executive director of NO/AIDS Task Force, "expresses some frustration" with ExcelTh, based on complaints they receive from their clients. "The program is not at fault," he says. "It's more like some bills haven't been paid."
NO/AIDS started its involvement in the Ryan White plan in April, with a $200,000 grant. The agency served 33 clients that first month and estimates its July figures to be in the 90s. The transfers from ExcelTh resulted in around 30 absorbed clients at NO/AIDS. Twilbeck says he can confirm that all but two people from ExcelTh were successfully absorbed into an agency.
"We've been absorbing them as much as possible," Twilbeck says, "but the problem is we're not working with a pool of dollars that is unending. When you apply for the grants with New Orleans Regional AIDS Planning Council, you know you need three to four months of coverage to prevent lapses. The Office of Health Policy makes that clear from the get-go. But that doesn't make it easy. However, you need to make sure you can keep your doors open and be able to service clients."
For his part, George says he turned to friends during his lapse in prescription coverage. "My friends were able to supply me with medication during the couple of days it took me to be transferred," he says. "Thank God for them. I don't know what I would have done without them.
"As soon as NO/AIDS learned of my situation, they worked immediately to take me out of ExcelTh and place me with another pharmacy, Statscript. My case manager (Michael Hickerson, with NO/AIDS) did a fabulous job.
"The last thing a person with a serious illness needs is stress," George says. "During this whole affair, I couldn't get out of bed from stress. Being in this condition and needing this medicine to live, it makes you like a junkie. It takes all your energy out of you worrying about where your next pill is coming from."