Marcus, a native of Pocatello and part-time college student, sat quietly with a large folder full of papers stacked in front of him. He is HIV-positive, something his friends and family don't know and the reason Marcus asked that his real name not be disclosed. Freckle-faced with short, wiry hair, he opened his brown, leathery folder, revealing a veritable library of test results, medical bills, letters and invoices, all pertaining to his disease.
"I call it my 'Life Folder,'" he said.
The virus has become so engrossing, so omnipresent that Marcus said it "takes over." Where one would think that any folder labeled "life" would consist of pictures of family and friends, or letters of love and achievement, Marcus' is full of medical bureaucracy.
HIV-positive since 2007, Marcus qualified for Idaho's AIDS Drug Assistance Program because of his limited income. Laid off as a retail sales manager, he received unemployment benefits and was able to work with a case manager to help him through the process of receiving treatment for his HIV, understanding the progress the virus had made in his body, while considering the limits of treatment options.
"It was a lifesaving process, you know. I had someone to support me and was able to have meds to keep me alive," he said.
As soon as the pills were available, Marcus started his antiretroviral treatment. As a result, his viral load (a quantitative measure of the virus in a sample of blood) decreased, and his CD4 count (an indicator of the vitality of the body's immune system) increased significantly to levels tantamount to that of a normal immune system. However, when Marcus went off unemployment benefits after taking a new full-time job in Boise, he no longer qualified for ADAP enrollment based on his new income.
"It was great to get a good job, but not at the expense of losing my [ADAP] benefits," he said.
Marcus' new job, while providing a greater income to pay for the essentials, does not offer medical insurance coverage for prescriptions. With no coverage, he is forced to pay for his continued HIV treatment at a price of about $1,100 a month.
"I don't know how many people have that kind of disposable income. I don't," he said.
According to the Kaiser Family Foundation, Idaho has nine people on its waiting list to receive subsidized antiretroviral medicine. It is one of only 12 states with a waiting list, though its nine-person list is nothing compared to Georgia with 1,287, Florida with 3,193 or Virginia with 1,103.
Every state has an ADAP program federally funded by the Ryan White Care Act, most recently renewed by Congress in 2009.
The Idaho Department of Health and Welfare refers to Idaho's ADAP program as the Idaho HIV State Prescription Assistance Program or SPAP.
The Idaho Department of Health and Welfare has two programs to help individuals pay for medications; the ADAP program and another called IDAGAP. Qualifications for ADAP include incomes at or below 200 percent of the federal poverty level, meaning an individual can make up to $21,780 before taxes, must be uninsured or underinsured, and not eligible for Medicare or Medicaid.
IDAGAP is also called a State Prescription Assistance Program (SPAP) and assists individuals who are enrolled in a Medicare Part D Insurance Plan pay the high cost medication co-pays and donut hole costs. IDAGAP assistance ends when the individual reaches their catastrophic coverage portion of the plan, which results in much lower co-pays. Qualifications for IDAGAP include, incomes from 151 to 200 percent of the federal poverty level, meaning a single person must make between $16,335 and $21,780 a year, enrolled in a Medicare Part D insurance plan, and do not qualify for low income assistance through Medicaid.”
According to Bebe Thompson, Ryan White Part B / ADAP coordinator for Health and Welfare, a person making less must not qualify for either Medicaid or Medicare to then be enrolled in ADAP, adding "most adults are not currently eligible for Medicaid, unless they have a disability or are low-income and elderly."
Individuals whose incomes are between 0 and 150 percent of the federal poverty guidelines may qualify for low-income subsidies to assist with Medicare Part D plan premiums, deductibles and co-pays.
But Marcus does not qualify for Medicaid or Medicare, and his income exceeds the 150-200 percent federal poverty guideline. He said he has been charging previously unused credit cards, eating up available credit and getting short-term, high-interest loans to pay for his pills. The stigma of his disease makes him reticent to disclose it to his family and ask for help. He makes too much to stay on ADAP or other social programs but doesn't make enough to pay for his treatment without incurring massive debt.
"I feel I'm poor, but not poor enough by their standards," said Marcus.
Even if he were a full-time student with health benefits offered by his university, the annual prescription coverage limit would be reached too quickly to provide adequate treatment. Visible concern washed over Marcus' face as he described his current situation. His eyes narrowed and his voice lowered.
"I'm tempted to go off my meds and see what happens," he said. "But I know what that means."
Boise-based Allies Linked for the Prevention of HIV and AIDS recently moved into a new downtown office. Founder and Executive Director Duane Quintana gave BW a quick tour as he navigated stacks of boxes, used furniture, and other miscellany--a collection of organized chaos. Quintana, who himself was, up until recently, on the Idaho ADAP waiting list, sat stoically at his desk as he spoke of the frustrations surrounding the state program.
While most individuals who are or have been wait-listed may be more concerned about accessing ARVs, Quintana's major contention is with pharmaceutical companies' drug pricing. With a constant stream of new cases of HIV nationwide, "pharmaceuticals have no incentive to change their prices," Quintana said. Because the U.S. patents on these drugs are still held by their drug makers (with some patents being renewed and thereby extended), the possibility of cheaper generic versions does not currently exist in the United States.
A pressing issue, said Quintana, are individuals whose incomes are too high to qualify for ADAP but also not high enough to make medications affordable and not take too much of their discretionary income.
"These individuals pay too much out of pocket," said Quintana. "The expense to keep their HIV in check becomes unnecessarily prohibitive."
"Many [ARVs] are expensive."
Ultimately, it's a sad bit of irony that it may be good to be on the ADAP waiting list because it means the person qualifies for ADAP coverage. While on the list, they may qualify for a "patient assistance" program through a specific pharmaceutical company offering discounted or free medication.
For ADAP, unless new funding comes from Ryan White Care Act funds or from the state (both unlikely scenarios), an opening is created when a person is disqualified from ADAP coverage, such as in Marcus' case, or when a person dies.
Should the Affordable Care Act, pejoratively referred to as "Obamacare," be fully implemented, Thompson said that she believes the act will reduce the enrollment of Idaho's ADAP rolls by as much as 75 percent due to the expansion of Medicaid coverage to adults receiving incomes up to 133 percent of the poverty rate, an elimination of lifetime caps on coverage and removing private insurance exclusions for pre-existing conditions.
Thompson also stated it is difficult to determine what the impacts of any employer mandate to provide private health insurance would have on Idaho's ADAP enrollment. The ACA will ultimately be tested by the U.S. Supreme Court in March, when it considers the new law's constitutional muster.
Though he's working on his associate's degree in science, Marcus said he wants to eventually go into nursing.
"Perhaps even a double major in poli sci as well," he said with a sly grin.
Marcus said he would consider himself lucky just to be wait-listed for ADAP.
"Even if I had to wait to receive my medicine, I'd rather do that than just wait for my economic situation to improve so I can pay for it. You don't stay on the list forever."
Disclosure: The reporter on this story is a former board member of A.L.P.H.A.