Jennie Yeaman was pregnant with her first child when a routine blood test revealed she was HIV-positive. “I got it from having sex with my husband,” she said. “Imagine that.”
That was 18 years ago, before anti-retroviral medications transformed AIDS from a death sentence to a chronic condition. She was overjoyed that her newborn son wasn’t infected but didn’t know if she would live to see his first birthday.
Her timing couldn’t have been better. Around the time of her son’s birth, HIV medications came on the market that have enabled patients to live normal lives for decades.
Now the 48-year-old Huber Heights mother has different goals: “I want to see my son get married. I want to hold my grandbabies.”
Her future seems uncertain again, however, because the Ohio Department of Health canceled her enrollment in the state’s Ryan White program, also known as Ohio HIV-AIDS Drug Assistance Program (OHDAP) that provides HIV meds for 5,000 Ohioans. She was among 257 patients kicked out of the program because she earned more than $32,490 a year.
“I got the news on Friday, July 2, and my meds were gone by the following Tuesday,” she said.
Less than three months later, she lost her job.
Although her lost income made her eligible again for the OHDAP program, she was forced to join the 232 patients on a waiting list.
“Am I waiting for someone to die, so that I can get back on the list?” she asked. “When I was first diagnosed, HIV was a death sentence, and I’m worried I could be looking at the same situation. If you take away my meds, it’s not a chronic condition any more.”
For now, she’s doing what many others are doing in her situation — working with her case worker to get her meds through a pharmaceutical company’s patient assistance program. But that’s a stop-gap measure that comes with no future guarantees.
She’s thinking of protesting before the Columbus Statehouse with a poster bearing the slogan, “No Job, No Insurance and No Meds.”
She declared, “I am here and I’m willing to fight. I did not make it for 18 years in order to roll over now.”
Hunter Cardwell is still getting his HIV meds through OHDAP, but the program has stopped supplying his other prescriptions for multiple health problems that have made it virtually impossible to work. The 49-year-old Dayton man stopped taking his diabetes medication and recently refused to be hospitalized because he didn’t want yet another oppressive stack of bills. “My medical bills go straight into the trash,” he said. “I don’t know what else to do. I can’t pay them.”
Cardwell had high hopes that things would be better under the Obama administration. “For me, things have only gotten worse,” he said. “I used to think I would never leave Ohio because I got so much assistance. Now I don’t know.”
Advocates for AIDS patients are disheartened by the new OHDAP eligibility requirements. “Who would have thought that, in 2010, we’d still be fighting for medications to keep people with HIV/AIDS alive?” asked Bill Hardy, executive director of the Dayton-based AIDS Resource Center Ohio.
Kevin Sullivan, executive director of the non-profit Ohio AIDS Coalition, said that the stricter eligibility requirements came about because of a combination of dwindling resources and increased enrollment. “The Ryan White program was supposed to be temporary when it began in 1990,” Sullivan noted. “They say there’s nothing more permanent than a temporary government program. But it’s not a long-term solution. There’s a great deal of hope that health care reform legislation will greatly benefit our clients.”
Anti-retroviral medications not only prolong life but also reduce the risk of transmission, said Dr. Jeffrey Weinstein, an HIV specialist at Miami Valley Hospital. “When they’re on treatment these patients are ‘viral low’ and can’t transmit HIV to anyone else,” he said. “These meds are expensive but they prevent much more expensive hospitalizations down the road.”
When Weinstein did his residency in the early ‘90s he recalled that “we never worried about the future with our HIV patients, about their heart problems or cholesterol levels, because they wouldn’t live that long. Today the people who die from AIDS are mostly people who don’t know they have it or are not taking their meds. The progress has been really amazing to see, and it’s disconcerting to see it go down the drain because of funding problems.”
In July Weinstein wrote Gov. Ted Strickland, urging him to pump more money into the OHDAP program. “Many patients in the developing world now have access to these treatments via generous donations by the pharmaceutical companies — governments including the U.S., and private philanthropy,” he wrote. “Unfortunately now many in our own communities will be forced onto waiting lists to receive treatments that are among the most effective (and cost-effective) of any ever developed by medical science?”
On Sept. 2, Strickland announced that $12.8 million in Medicaid funds would be restored to OHDAP. Weinstein said he’s gratified that Strickland listened but noted the reprieve is only for this fiscal year “and next year we may be in a budget crunch again.”
Ohio’s projected budget hole for its next two-year budget is projected to be as high as $8 billion.
Thanks to the infusion of new money, patients who have been on the waiting list before July 8 may now be eligible for the program. But that won’t help Yeaman, who lost her job in September.
“They’re not just deciding about dollars, they’re deciding about human lives,” she said. “What are they going to tell my son — ‘Sorry, your mom’s not worth the money?’”
