Protect Access to Health Care for South Carolinians Living with HIV

The Affordable Care Act (ACA) provided many people living with HIV with health insurance coverage for the first time. Prior to the ACA’s health reforms, they were denied private health insurance coverage or could not afford the high cost of the coverage available to them. Returning to a pre-ACA state would be disastrous for many individuals who are finally able to access health care under the current initiatives and would undermine public health efforts to end the AIDS epidemic. People living with HIV cannot afford to be stripped of their health insurance coverage. Their health and in many cases their lives, depends on preserving and building on the reforms that have worked for them, providing access to essential, life-saving health care services and prescription drugs. While many of these decisions will be made by the federal government, the South Carolina legislature can protect access to care for people living with HIV by opposing federal efforts to reduce access and cut Medicaid, and by maintaining important consumer protections and programs for people living with HIV at the state level.

Invest in the AIDS Drug Assistance Program: The Ryan White AIDS Drug Assistance Program (ADAP) continues to play a critical role in addressing coverage gaps and affordability of health care. It also ensures access to care and treatment for those who remain uninsured. Ryan White remains the largest source of federal funding exclusively dedicated to HIV-related treatment, care, and support services, serving 536,000 people with HIV each year. In 2015, the South Carolina ADAP served a total of 8,816 South Carolinians living with HIV, providing them with access to necessary lifesaving medications.[1] Continued investment in this program will help reduce future transmissions and contain HIV care costs.

Ryan White is a payer of last resort and an important safety net for low-income people living with HIV, particularly for South Carolina as the state has not expanded Medicaid. People who have health insurance also count on the program for access to uncovered, yet essential, health care services or for help with premium and cost-sharing payments. Integrating Ryan White’s coverage and affordability completion services with health reforms can help end the epidemic. 83% of Ryan White clients in 2015 achieved viral suppression whereas, nationwide, just 30% of all people living with HIV achieve this goal. Once someone living with HIV is virally suppressed, it is nearly impossible for them to transmit the virus.[2] South Carolina should continue contributing state funds to the AIDS Drug Assistance Program at current levels or increase its funding to effectively address the HIV public health crisis and capitalize on this opportunity to end the epidemic.

Address Cost Sharing as a Barrier to HIV Treatment: One of the public’s urgent health care concerns is prescription drug affordability. In 2015, the FDA approved the largest number of first-of-a kind medications, and more are expected to be approved in 2016. These innovative drugs are often specialty medications, the type of medications that people living with HIV rely upon. We have seen insurers implement various practices to limit access to them. These practices include posting misleading or intentionally vague formularies on marketplace websites, making it difficult for people to determine whether a plan covers their medications. Plans also exclude essential HIV medications, such as single tablet regimens, from drug formularies altogether, or place drugs on formulary tiers with extremely high consumer cost sharing. In many states including South Carolina, co-payments of 50% for all federally recommended HIV medications are now the norm.

South Carolina should examine methods to control treatment access issues related to formulary transparency, coverage of essential medication and the high cost of prescription drugs. As to cost or rising drug prices, South Carolina should enact a law limiting cost sharing for specialty medications – for example to $100 or $150 per prescription per month or $1,000 annually. California, Maryland, Delaware, Louisiana, Maine, Maryland, New York, and Vermont have already passed similar bills. South Carolina can also increase transparency by requiring issuers to include the true out of pocket dollar cost for prescriptions. Additionally, South Carolina should prohibit issuers from altering their formulary once the open enrollment period to select plans has ended. Implementing these reforms will ease the burden of prescription costs on consumers, enable better adherence to treatment regimens, end the epidemic, and ultimately save lives.

Defend Consumer Protections in Private Insurance: Approximately 27% of American adults under the age of 65, or 52 million Americans, are currently living with conditions such as HIV that would leave them uninsurable if they applied for an individual health plan under pre-ACA underwriting practices, which allowed for pre-existing condition exclusions and premium rating based on health status.[3] The ban on medical underwriting and pre-existing condition exclusions secured reliable coverage for people living with HIV for the first time and should be maintained. Additionally, these consumer protections should not be contingent on continuous coverage requirements. Continuous coverage requirements will result in individuals being unable to find affordable coverage and then finding themselves permanently locked out of coverage due to increased premiums. Individuals living with HIV are among most vulnerable to the penalties of the continuous coverage requirements. South Carolina legislators should support maintaining the ban on pre-existing condition exclusions and medical underwriting without a continuous coverage requirement, even if these protections are repealed at the federal level.

The ACA also implemented important benefit design requirements, such as no lifetime or annual caps as well as required coverage of key services and medications. Lifetime and annual caps, before the ACA, often resulted in people living with HIV ‘maxing out’ on their coverage and getting cut off from health care when they needed it the most. Without strong consumer protections, insurers will once again utilize benefit designs that penalize individuals living with HIV and prevent them from getting the care they need. Individuals living with HIV need a minimum benefits package that includes the range of services and treatments needed to manage their conditions, including prescription drug benefits, substance use and mental health treatments, and preventive services. South Carolina legislators should voice their support for preserving these important consumer protections, and commit to preserving them even if repealed at the federal level.

Protect Medicaid’s Traditional Entitlement Funding: Medicaid is a lifeline to care and treatment for more than 2,800 South Carolinians living with HIV. Medicaid has traditionally been funded to reflect actual health care spending. Proposals to end Medicaid’s entitlement status threaten the health not only of people living with HIV, but all of the 998,000 South Carolinians who rely on the program. A per capita cap proposed by the House of Representatives would cut Federal spending on Medicaid by 24.8% by 2026.[4] Spending caps or block grants will shift costs onto South Carolina and would likely result in cutting critical optional services, such as prescription drugs, and further limiting already restrictive provider networks. The most recent proposal would have shifted $2 Billion in costs to South Carolina.[5] Spending caps or block grants would also hinder South Carolina’s ability to flexibly respond to public health emergencies (such as disease outbreaks) and provide access to new, effective cures or treatments for serious or chronic health conditions. These funding proposals are sure to result in larger numbers of uninsured people living with HIV. Shifting Medicaid costs to South Carolina and/or modifying eligibility requirements will result in service cuts and cost-sharing levels that jeopardize access to lifesaving HIV care and treatment. South Carolina legislators should oppose ending Medicaid’s entitlement funding structure.

Ensure Financial Support for Access to Meaningful Health Insurance: Lower income communities are disproportionately affected by HIV. Approximately 60% of people living with HIV are at 138-400% FPL,[6] making them eligible for subsidies to purchase insurance. At the start of the ACA, almost 23,000 people living with HIV already in care and 420,000 adults living with HIV not in care were eligible for financial assistance on the Marketplaces. Many of these individuals used subsidies provided by the ACA to purchase private insurance for the first time. Without subsidies (based, in part, on income) to defray the cost of premiums and cost sharing for treatment and care, meaningful care will quickly become unaffordable once again for these individuals. South Carolina legislators should voice their support for providing meaningful tax credits, scaled to income, to support purchase of comprehensive health care plans.

[1] National ADAP Monitoring Project: 2016 Annual report, National Alliance of State and Territorial AIDS Directors (February 2016), available at https://www.nastad.org/sites/default/files/2016-National-ADAP-Monitoring-Project-Annual-Report.pdf.

[2] Myron S. Cohen, et al., Antiretroviral Therapy for the Prevention of HIV-1 Transmission, The New England Journal of Medicine, (2016) available at https://www.ncbi.nlm.nih.gov/pubmed/27424812.

[3] Kaiser Family Foundation, Pre-existing Conditions and Medical Underwriting in the Individual Insurance Market Prior to the ACA (December 2016), available at http://files.kff.org/attachment/Issue-Brief-Pre-existing-Conditions-and-Medical-Underwriting-in-the-Individual-Insurance-Market-Prior-to-the-ACA.

[4] Edwin Park, CBO: 24 Million People Would Lose Coverage Under House Republican Health Plan, Center on Budget and Policy Priorities (March 2017), available at http://www.cbpp.org/blog/cbo-24-million-people-would-lose-coverage-under-house-republican-health-plan.

[5] Urban Institute, The Impact of Per Capita Caps of Federal and State Medicaid Spending (March 2017).

[6] Jennifer Kates et. al, Assessing the Impact of the Affordable Care Act on Health Insurance Coverage of People with HIV, Kaiser Family Foundation (January 2014), http://kff.org/hivaids/issue-brief/assessing-the-impact-of-the-affordable-care-act-on-health-insurance-coverage-of-people-with-hiv/.