Few conditions have been fraught with as much upheaval as HIV in the past generation and the Patient Protection & Affordable Care Act promises further change. A far cry from the days when a diagnosis of HIV was considered a death sentence, HIV is universally accepted as a manageable condition. When the Affordable Care Act (ACA) is fully enacted, it will fill in the missing puzzle piece - insurance - that prevents so many from accessing the necessary care to make control the disease.
"Medicare, Medicaid and Ryan White have been the major programs that closed the gap for people with HIV," said Carmen Portillo, PhD, RN, director of nursing research training program on HIV Care and Prevention, University of California San Francisco. "Currently, 28 percent of people living with HIV are in an undetectable viral mode, which means in care and on a combination of medications reducing the virus to the point where it cannot be detected. It's pretty astonishingly low considering the resources of the U.S."
Improved Insurance Access
With only small percentages of patients with HIV owning private insurance - only 13%, according to the Department of Health and Human Services - the biggest changes will be the removal of the pre-existing condition barrier to buying insurance and the expansion of Medicaid.
Beginning in 2014, individuals with HIV will be allowed to partake in health insurance exchanges at the state level. People with income up to 400 percent of the federal poverty level (up to about $45,000 for an individual and $92,000 for a family of four) will receive federal tax credits and subsidies designed to make insurance more affordable.
Many states are currently developing health insurance exchanges. According to the National Conference of State Legislatures, as of August, 10 states and the District of Columbia enacted legislation to establish state-based health insurance exchanges and four states have established an exchange by executive order. Governors in New Jersey and New Mexico vetoed establishment bills passed by the legislature. Massachusetts and Utah passed laws prior to the enactment of the ACA.
"Individuals living with HIV will now get some support in buying into these exchanges," said Susan Stringari-Murray, MS, RN, ANP, ACRN, AAHIVS, clinical professor and director, University of California San Francisco. "Not only will insurance be more available but it'll be affordable." Stringari-Murray's native California was the first state to establish a state-based exchange based on the ACA. Anecdotally, she and Portillo both speculate more patients with HIV in the San Francisco area are already seeking treatment in greater numbers, partly because of bridge measures including the removal of the pre-existing condition clause for those under age 19 and elimination of lifetime caps on insurance.
Closing the Medicaid Gap
With so few patients with HIV able to access private insurance in the past, many turned to Medicaid only to be denied. "In order to get Medicaid, you have to be disabled and it's also means-tested," said Stringari-Murray. "Even if they meet the income requirements, infected individuals may not meet the definition of disability. Patients had to always be both poor and disabled." In the context of HIV, patients usually had to acquire an opportunistic infection like lymphoma or encephalopathy to be approved for Medicaid. Come 2014, states will be required to expand Medicaid eligibility to individuals with incomes up to 133% of the poverty level (estimated to be about $15,000 for an individual or $31,000 for a family of four).
Yet, even the Medicaid expansion is complicated. States have the option of opting out, as the Supreme Court ruled that the federal government cannot withhold funding from non-compliant states. In those cases, only new funding can be withheld. The federal government will pay for nearly all of the expansion, yet several states are refusing the funding on philosophical grounds.
Texas, Georgia and Florida governors have announced plans to refuse the Medicaid expansion funding and many other states won't be addressing the issue until after the November election.
"It's a lot of money to pass up," Dee Mahan, JD, director of Medicaid advocacy at Families USA, shared with ADVANCE. "What we're hoping is that, as time goes on, there will be pressure on governors to change their minds. It happened in Wisconsin where the governor originally said no and is now on the fence. We're foreseeing a battle between governors and legislatures in many states."
Currently, the Ryan White Comprehensive AIDS Resources Emergency Act is the largest federal safety net program for patients with HIV and serves 50,000 each year. It's unknown what changes the ACA will bring to this program. "I've been researching the affect on Ryan White but couldn't find anything," said Portillo. "But, as the epidemic grows, the same amount of funding has to go further. As HIV becomes a chronic manageable disease, the number of people living with it increases. In San Francisco, our Ryan White funding has decreased over the past 5-10 years and I imagine this will continue."
Test - and Treat
In addition to complex payment changes, a number of changes are pending in the care models for patients with HIV - and providers are optimistic about treating HIV in a primary care setting. Providers in California have been educating the healthcare workforce to prepare for the influx of new patients with HIV. At Stringari-Murray's clinic in San Francisco General Hospital Medical Center, a controversial test-and-treat program immediately links patients with a positive HIV diagnosis to antiretroviral drugs.
Critics argue expensive second-line drugs will become necessary if HIV resistant strains develop. UCSF's David V Vlahov, PhD, RN, dean of the school of nursing, classified test-and-treat as ethical as well as practical. "Treatment is prevention," he noted. "It involves reducing risk to transmission to others. Today's treatment is much more palpable. Patients used to have to take 28 pills a day and swallow some with milk. Now it's very simplified. In reducing viral load, we know transmission rates will go down. HIV management depends upon getting identified, tested and treated. ACA provides a backbone for public health prevention."
Whether test-and-treat survives on the West Coast or becomes a national policy, nurses will take center stage in the public health prevention role. "We see in 3-5 years the return of the shortage," said Vlahov. "Nurses will age out of the workforce. Add to that so many more being insured, in 2014, we'll need many more APNs in primary care. In nursing education, we're trying to meet that challenge. We're seeing the need to train APNs because it takes 2 years or more and we need to get behind the idea of getting into advanced education. Their role is going to be significant."
Robin Hocevar is senior regional editor at ADVANCE.