Loren Jones was diagnosed with HIV 28 years ago. A relatively low viral load meant that for a long time, Jones, a 59-year-old African American woman, didn’t feel sick at all. “I ignored it completely,” she says of the first few years of her illness. “I was the kind of person who had always been very healthy. I don’t catch cold very much, even now. I basically tried to pretend it wasn’t there.”
It was only three years ago that Jones went on any sort of medication for the disease. The cost of her medication, a once-daily combination drug called Atripla, is approximately $22,000 a year, an impossible cost for someone like Jones who does not collect a paycheck.
While HIV/AIDS policy and funding have received more attention than usual in recent months, the state continues to reel from budget cuts prompted by sluggish tax revenue. These budget cuts, combined with ongoing efforts to reform healthcare could hurt already vulnerable patients, advocates say.
Ten California counties are rolling out healthcare reform in advance of 2014, when healthcare reform takes effect nationally. HIV/AIDS service providers want to make sure that the changes healthcare reform brings won’t further compromise care for any of California’s 190,000 people living with AIDS or HIV.
Advocates are especially worried about the shift away from wraparound services, like housing assistance, towards a more medical model of care. The end of federal funding dedicated specifically to low-income people with HIV/AIDS is also a concern. These changes are likely to hurt the low-income communities already hard hit by statewide cuts in HIV/AIDS prevention programs.
About $85 million dollars was cut from the California Office of AIDS budget in response to the budget crisis in fiscal year 2009-2010, according to a report from the UCSF AIDS Policy Research Center. That’s about half as much as the program’s budget in 2008-2009.
The reduction in funding resulted in devastating cuts to prevention efforts. Many community-based and support service organizations were forced to drastically reduce their services or close their doors altogether.
“These cuts have the impact of even further decreasing access to vulnerable communities,” said Dr. Ifeoma Udoh, Research Director at Pangea Global AIDS Foundation, an organization that supports HIV strategies primarily through research and evaluation.
In Alameda County, African Americans are most heavily impacted by HIV/AIDS, representing 43 percent of prevalent AIDS cases and half of HIV cases. The communities most vulnerable to the HIV epidemic include heterosexual girls and women, men who have sex with men (particularly African American and Latino men) and injection drug users.
“There’s also an economic issue,” said Tom Mosmiller, a Program Manager at Alameda County Office of AIDS Administration. “It’s moved from a middle-class disease of the white, gay, middle class male, to also a disease of low-income people of color.”
Low-income people need wraparound services, which help with finding a stable home, employment and transportation. The stability these services bring help people maintain their treatment regimen.
Loren Jones is well aware of the hardships of being both low income and HIV positive. In addition to her own experience, she volunteers much of her time working with AIDS advocacy and research groups.
She said that housing services were one of the first things to go. Jones lives in a studio apartment in Berkeley, affordable only through subsidized housing.
“When you have a disease where you need to have community, that’s a very frightening thing to not have a place to live,” she said.
Jones considers herself different from many low-income people. She attended Penn State, and later became a Licensed Vocational Nurse through Laney College. In addition to arming her with an extensive knowledge of the human body, she has some basic educational advantages.
“I don’t think that we are fully aware of how many people in our culture, especially low-income people, that don’t read really well,” she said, which is key to understanding one’s options for treatment or assistance.
“If you don’t know what’s on paper or you can’t go someplace and look up information and compare what you’re reading with what you’re being told, then you don’t really have much choice, and then you’re always at the mercy of whoever you’re talking to,” she said.
She has also said that the food resources have grown much tighter now. The resources are there, but their nutritional value is lacking – not helpful for the already-depleted immune systems of HIV/AIDS patients. For years she and many others made up the nutrition deficit by drinking supplemental shakes like Ensure, but the shakes are no longer provided.
Advocates are concerned that healthcare reform may not strengthen efforts to improve wraparound services so important to people like Jones, and may even weaken them.
For instance, the Obama administration unveiled the first National HIV/AIDS strategy in 2010, a “monumental document,” according to advocate Sonia Rastogi. “It was the first time the U.S. admitted to and created a plan around the domestic epidemic,” said Rastogi, a program coordinator for the Positive Women’s Network.
The strategy, however, tends to focus on those efforts that are quantifiable – results from new medicines, for example – creating a system that rewards a medical model with funding while wraparound services suffer.
“Support services and wraparound care are the first things to get cut and put on the table to see if they’re necessary for meeting certain types of goals,” Rastogi said.
She gave the example of an HIV community-based organization (CBO) seeking funding. To line up with the strategy’s goals and secure funding, the CBO would want to demonstrate that they are, for example, reducing incidents of HIV.
However, many community-based organizations focus on support groups or peer-to-peer supportive services. They do not necessarily know how to quantify the effect it may have on preventing HIV infection.
“They have to figure out how to quantify those things and that might be hard,” Rastogi said.
Similarly, because of HIPAA (the Health Insurance Portability and Accountability Act of 1996), if the CBO is not attached to a clinic or a healthcare provider, they cannot access information on a patient’s CD4 cell count and HIV viral load – indicators of the disease’s progression and the patient’s response to therapy.
“So basically a lot of CBO’s are having to figure out how to change the way that they do business,” Rastogi said.
Other potential problems, particularly issues with continuity and ease of care, suggest that healthcare reform may need to pay more attention to the needs of people with HIV/AIDS, advocates say.
California has in place the Low Income Health Program (LIHP), a new optional program for low-income patients that will bridge the gap between now and when major provisions of the Affordable Care Act will be in place in 2014.
“The program had been developed over the last few years and had overlooked the needs of people living with HIV and AIDS,” Tom Mossimiller explained.
For example, there is a medication dilemma. Right now, many patients like Loren Jones qualify for ADAP, the AIDS Drug Assistance Program, which assists uninsured and underinsured AIDS/HIV patients with access to their medications. Patients qualifying for ADAP can go to their neighborhood pharmacy to get their medications.
“The LIHP program doesn’t have any deals like that, or any arrangements worked out with commercial pharmacies,” Mosmiller said. LIHP patients only have access to their clinic’s pharmacies, so it raises the question of where HIV clients will go for their medications.
“Will they be prevented from going to the neighborhood pharmacy that they may have been going to the last 5 or 10 years? Will they have to go to a new pharmacy? The clinic’s pharmacy? Will there be a long wait? We’ve got some challenges we’ve got to figure out,” Mosmiller said.
Sonia Rastogi explains that under the Affordable Care Act, there’s more of an emphasis on getting uninsured or underinsured patients, including those with HIV, to Federally Qualified Health Centers for their healthcare.
Her concern is that “those community clinics most likely do not have an HIV specialist on board or an HIV care and treatment function in their infrastructure.”
For Kabir Hypolite, the Director of the Alameda County AIDS Office, continuity is also a big concern. Patients may have been receiving treatment from the same doctor for years, and developed a relationship with their healthcare providers. He said making sure those relationships remain intact is important.
“That’s really key for things like treatment adherence, which is key for controlling the HIV virus, both at the individual level and also in the community,” Hypolite said. “If your viral load is high, not only do you have a poor outcome, you’re also more infectious with intimate partners.”
If patients are forced to change their provider, or if it’s made inconvenient or lacks the support services – childcare, transportation vouchers, legal assistance – it could have a major impact on patient adherence to treatment.
In the past, the low-income gap has been resolved through the Ryan White Care Act, a large contributor to low-income AIDS and HIV patients since its inauguration in 1991. The Act, simply known as “Ryan White” is the single largest federally funded program for people living with HIV/AIDS and the only Act dedicated to a single disease. Sonia Rastogi calls it the “payer of last resort,” as it seeks funding to allow for lower income, uninsured and underinsured patients to have availability for treatment.
“I think one thing everybody is really worried about is what’s going to happen with Ryan White with respect to affordable healthcare,” Udoh said.
The act is supposed to sunset in 2014, as the new healthcare reform takes over. But HIV advocates and patients are worried: what happens if Ryan White goes away?
“Ryan White is specific, set-aside HIV dollars that are supposed to go specifically to HIV/AIDS, meaning setting up things like ADAP, which is a set aside pot of money that states can tap into to fund reduced costs for HIV meds,” Udoh said.
She said that she and other HIV workers are eager to have government clarification on how the new system will play out.
“I think an immediate lesson learned is that as we continue moving forward with healthcare reform, we need to make sure that HIV is immediately included at the earliest stages,” Mosmiller said.