What if You Can’t Afford Your HIV Meds?
Last year, Howard Sellers says he faced an impossible choice: buy groceries or pay for his anti-viral HIV medicine. “There were times I would skip my doses of medication because I just didn’t have the money to pay for it,” Sellers told us. “It started getting so bad that I would literally miss about a month of meds.”
Sellers, who has worked for the Department of Education since 2002, had been at P.S./M.S. 165 on the Upper West Side for seven years, first as a teacher, then as a community coordinator and dean.
“The DOE health plan didn’t cover all my anti-viral meds,” Sellers explained, noting that his monthly co-payments frequently added up to more than $400, in addition to his student loan payments and his $1,050/month apartment share in Fort Washington.
Sellers, who graduated from SUNY New Paltz and Columbia Teachers College, says he made his starting salary, around $48,000 annually, for years until he recently received a small raise.
“They bumped me up to 54. I was supposed to get a raise of 7K [more], which didn’t happen, but I came to work because it’s about the kids, and I was just hoping that it would happen eventually. It didn’t.”
Skipping medication put a dangerous strain on Sellers's body—he estimates that he was hospitalized at least a half-dozen times during his last two years of work. Eventually, the 36-year-old educator says he lost roughly 30 pounds and survived on school lunches.
“I couldn’t even get a second job, because there was so much on my plate that when I left school at eight or nine at night, there was nowhere for me to go work, because I was back at school at seven the next morning.”
Last summer, Sellers began writing checks to himself from the school’s checkbook.
“I wrote exactly the amounts for my meds, so if my meds were $280, I’d write myself a check for $280. If my meds for the months were $330, I would put $330. I’d use my checks to supplement my co-payments for my meds.”
Over the course of five months, Sellers stole around $2,200.
“I acted in desperation, and I got by for a little bit, but my conscience weighed on me.”
That's when he decided to confess to his principal.
“I said to her, look, I have an illness that you haven’t known about that I’ve been suffering with. I haven’t gotten a pay raise, I’m stressed, I’m struggling here, I’m living paycheck to paycheck I don’t have food,” Sellers said.
Still, given the relatively small sum, his confession, and his willingness to repay what he stole, Sellers hoped that his principal would contact the DOE’s Office of Special Investigations, which “investigates allegations of improper or unlawful behavior,” or the Special Commissioner of Investigation, which handles more serious cases of “fraud, misconduct, conflicts of interest, and other wrongdoing” in the city’s school system.
Instead, the principal called the NYPD.
“It was like, OK, I just outed myself to someone who I thought was my friend, and she just completely threw me under, and it’s just been crazy since.”
In January, the Manhattan DA’s office charged Sellers with grand larceny, a felony, and identity theft and criminal possession of a forged instrument, both misdemeanors. Sellers was suspended from his job without pay, leaving him without health insurance. He lost his room in the Fort Washington apartment share, and has been hospitalized three times, most recently for contracting the parasite cryptosporidium.
After one stay at Presbyterian Hospital, Sellers says he was unable to afford his medication; a physician ended up buying it for him.
“He's been the rock in his family, put himself through school, got financial aid and scholarships for New Paltz, got his masters, went through Teach for America, worked full time for eleven years, and can't afford drugs he needs to keep him alive, with health insurance,” says Alice Fontier, Sellers’ attorney.
“It's incredible that we live in a society that allows that to happen to people and then punishes them for it.”
Advocates say that New York State has some of the best coverage options for people living with HIV/AIDS in the country, but that it can be difficult to match the services to people’s needs.
“Having people understand the full spectrum of benefits, and navigating that benefit system is really challenging, even for folks who understand the health care system,” says Wendy Stark, the executive director at Callen-Lorde Community Health Center in Chelsea.
“Whether you're eligible for Medicaid or whether you're eligible for ADAP or for a qualified health plan under the health exchanges, or whether you can avail yourself of different subsidies at different institutions, even finding those institutions—it's a really tricky business.”
Those who aren’t eligible for HASA—which provides low-income New Yorkers with HIV or AIDS with housing, food stamps, and Medicaid, among other services—may be able to receive help from ADAP, the state’s AIDS Drug Assistance Program.
Under ADAP, New Yorkers making up to 435% of the federal poverty level—or $51,200—can receive drugs free of charge to treat HIV/AIDS, even if they are insured.
For those out of ADAP’s range, there are still options to receive help with co-payments, which can balloon under a treatment regimen that easily can include more than a dozen medications. Pharmacy discount cards (BigAppleRX, Needy Meds) and discount plans sponsored by drug manufacturers like Gilead or through public hospitals or community health centers can lower monthly co-payments.
Stark says the myriad options and resulting confusion is a result of “a system-wide problem with our nation's healthcare system.”
“Unfortunately, because of our complex health system, a really important part of how to treat these issues is just getting medication in the hands of people who need it, and not have those people have to make really hard choices between medication versus rent versus food versus other life necessities.”
Alexandra Remmel, the director for client advocacy at Gay Men’s Health Crisis, says that in order to meet the state’s goal of ending the HIV/AIDS epidemic by 2020, “we must grow our efforts to get information out about life saving services that can remove barriers to treatment.”
"Every doctor will tell you not to skip [medication], it's that extra inch that says: Now how are you handling the cost of this? What kind of insurance do you have? Is it covering what you need? Is the deductible too high?” Remmel says. “These are questions that are not scheduled into a visit, but should be."
Sellers says that at least one of his doctors warned him not to skip his medication, but that ADAP never came up while he was faced with his ordeal in school. Negative comments he said his principal made about men with HIV made him afraid he’d be stigmatized, which further discouraged him from seeking help.
“It made me kind of live this secret, and I never felt comfortable sharing that, so I didn’t,” he says.
Sellers is now on Medicaid through HASA, which pays for his medication, but HASA also requires him to reside at the St. Nicholas Hotel in Harlem, a converted SRO that he calls “filthy.”
“To be very honest with you, I dragged my mother out of that hotel many years ago,” Sellers told us. “You can look at the sinks and the tubs there are old cigarette burns on them. It’s really gross.”
He has a job at the Gap making $11.50/hour, but if he earns more than around $400 a week, he stands to lose his Medicaid and his benefits.
“I feel like I've hit rock bottom. I'd rather work and have an income then have to sleep in a hotel room somewhere and be living off HRA and living in one of their shelters.”
The DOE declined to comment on Sellers's case, other than to confirm his employment.
There is still the matter of the criminal charges against him—Sellers is due back in court at the end of the month. His attorney says the Manhattan DA’s office is offering him a deal: pay back half of what he stole and the felony will turn into a misdemeanor; pay it back entirely and it will turn into a violation.
Once the DA is finished with him, the DOE will determine whether he can go back to work.
“I want to clear my name. I want to get this over and done with,” Sellers says, adding that he is eager to work as an educator again.
“I was a product of the New York City Department of Education; I came out well. There are many kids of color who look up to men in the system. I feel that they need to see someone in a suit who is pushing for their education and their success, someone who is there to listen.”
“I was desperate and I made a mistake. I don’t feel it defines me.”
I
Comments