Iowa, other states scramble to meet HIV/AIDS prescription needs

While members of Congress work to reauthorize the Ryan White CARE Act, some states are scrambling to fulfill their role under portions of the existing program as a pharmaceutical provider of last resort.

A total of eight states — Iowa, Nebraska, Wyoming, South Dakota, Kentucky, Montana, Indiana and Arkansas —  now have waiting lists associated with the AIDS Drug Assistance Program, a specific funding stream within Ryan White Part B that provides medications to individuals infected with HIV or who have AIDS. The federal dollars, which come to the state as grants, can be disbursed according to guidelines set by the state. In Iowa and Nebraska eligible persons must have an income that does not exceed 200 percent of the current Federal Poverty Income Guidelines. In addition, Iowa includes a $500 work deduction from the monthly gross salary of those employed.

Although it isn’t the first time states have had to institute waiting lists for participation in the program, this does mark the first time such waiting lists have been instituted without a clear path to additional funding to provide the needed funds. In 2004 and 2005, more than 100 Iowans were placed on a waiting list. That backlog was cleared only when the Iowa state government stepped forward and provided its own funding to the ADAP program, something it has continued to do since that time.

“With our current system the way it is, if the program doesn’t constantly receive increases in funding, we’re always going to run into this problem,” said Holly Hanson, Ryan White Part B program manager for the Iowa Department of Public Health. “Flat funding will never work for us because the medications are good and people are living longer with this disease — which is a good thing — but diagnosis [of new cases] remains steady.”

In short, funding has mostly remained at a consistent level since the 2005 increases due to state appropriations, but the numbers of people seeking assistance has continued to climb. Iowa has roughly 100 new individuals diagnosed as HIV positive each year. Nebraska diagnoses roughly 40 per year. For each individual receiving assistance, the states estimate they spend between $8,000 to $10,000 a year.

“The current economic situation is definitely a part of it,” said Steve Jackson, program manager for the Nebraska Department of Health and Human Services. “We are seeing individuals who are requesting — outside of ADAP — assistance with COBRA premiums. That’s an entirely different category. It does, however, impact the ADAP if those individuals don’t have good drug coverage on their COBRA fund. They can then request assistance through ADAP. We are seeing about a 10 percent increase in the number of individuals who come into the program each year, and our funding is just not keeping pace with that.”

Hanson added that the programs have also seen an increase in pharmaceutical costs, but that cost is far overshadowed by Iowa’s dramatic increase in program utilization.

“We are basically the safety net,” she explained. “And all of the clients are required to work with a case manager, and we are working with all of those on the waiting lists to ensure that they continue to have access to the medications they need.”

Both Iowa and Nebraska have been able to work with patient assistance programs within the various pharmaceutical companies so that all of the people currently on waiting lists are not being deprived of critical, life-saving medications. Nebraska has also been able to establish collaborative programs with other agencies within the medical community that can serve as a stop-gap measure while the waiting lists exist.

“The problem is that many of the people living with HIV are on highly active retroviral treatments, which means that they are taking several medications that are often from different pharmaceutical companies,” Hanson said. “With each medicine, the person needs to apply with the appropriate pharmaceutical company for patient assistance. Each program could have different deadlines and different renewal times — making the entire process much more labor intensive for both the patient and the case workers.”

Although HIV, the virus that can result in AIDS, was considered a terminal disease only a decade ago, it is now considered a serious, but chronic condition by most medical professionals. Medications, especially the retrovirals, are key to keeping the disease under control, and they require an extremely high adherence rate. If doses are missed or if medication is stopped, the virus could become resistant to the pharmaceutical regiment and the patient becomes much less likely to fight off infection.

Iowa receives roughly $1.7 million in federal funds that is earmarked specifically for ADAP, including a supplemental grant. Although the state had been contributing $550,000 to the program, that appropriation was cut this year by $28,000 to $525,000.  Nebraska receives roughly $2.5 million in federal funding, and $900,000 from the state.

The Ryan White Act is the primary vehicle used by the federal government to send money to the states for HIV/AIDS prevention, education and care. Within the program, formulas have been created that provide greater assistance to areas who have historically had a higher incidence of diagnosis. Those formulas are at least partly to blame for why Midwestern states are coming up short in assistance dollars, according to Brandon M. Macsata, chief executive officer of the ADAP Advocacy Association.

“HIV/AIDS is no longer a disease that primarily strikes gay men in big cities,” he said. “In fact, communities of color and women are disproportionately impacted by the disease, especially in rural communities. Our organization contends that the money should follow the disease, and that is not happening — which is why you see waiting lists in middle America and not in states like New York and California.”

His organization has joined with others who have asked Congress to continue with the reauthorization of the program for a few more years, so that a better determination can be made on how it is working and what changes might need to be made. He also advocates that that ADAP funding throughout the nation needs to be increased by $230 million, just to keep pace with the demand.

For now the state programs will continue to seek assistance for those in need as best they can.

“I think we will be OK through March 31, when the Ryan White fiscal year ends,” said Hanson. “But I’m really worried that if we receive flat-funding from the feds and the state… I don’t know that we could get through our next Ryan White grant cycle with even just the people we currently have enrolled. I guess we need to… well… we either need to come up with a new national health care plan or increase funding.”

The existing authorization for Ryan White funding — named for the Indiana teenager who became an international symbol of HIV/AIDS in the late 1980s as he fought to attend school after he was diagnosed with HIV — is scheduled to sunset on Wednesday. That is, barring no action from Congress, no more appropriations past the March 31 end of this fiscal year would be made.

A spokeswoman in U.S. Sen. Tom Harkin‘s office confirmed to The Iowa Independent that Congress will not meet the deadline, but plans to issue a 30-day temporary extension so that mark-ups and drafts of a new bill can be created and passed by the end of October.

Although this reauthorization gives Congress an opportunity to look at ADAP and other funding formulas within Ryan White, passage of a new bill will likely not impact the existing shortages within the states.