This guest blog post is the second blog in a series on discrimination in health plans. In this blog we highlight how discrimination in health plans affects people living with HIV/AIDS and policy recommendations to address the issue.

While the ACA expanded access to private health insurance plans for low-income individuals through the creation of the health insurance Marketplace and the provision of subsidies, increasingly industry practices are preventing people with chronic conditions like HIV from fully benefiting from the law. The barriers to meaningful health insurance coverage can be summed up in three categories:

  1. Lack of Transparency: One of the goals of the Marketplaces was to permit consumers to compare health insurance plans and make an informed decision about which plan best covered their health care needs. However, failure to include cost information (such as the actual price of a medication when a consumer is expected to pay co-insurance), lack of standardization of plan formulary information, inadequate information on drug coverage and essential provider networks, inconsistencies between the Marketplace and plan websites, and changes to plan design subsequent to enrollment seriously undermine the ability of consumers to select the right plan for them.

    Recommendations for Advocates: Further legislation and regulations are needed to strengthen transparency at the state and federal level. For example, in Nevada, the Department of Insurance proposed a regulation to limit the ability of plans to reclassify drugs after the end of open enrollment.  Consumers should also be educated on what kinds of information to ask for when selecting a plan, such as drug pricing and mail order pharmacy requirements.
  2. Inadequate Coverage of HIV Medications: Despite early advocacy efforts, many health insurance plans do not cover all HIV medications, including single tablet regimes (STRs), in accordance with the standard of care as recommended by the Department of Health and Human Services (HHS). In many states, plans are covering fewer protease inhibitors, the class of antiviral drugs widely used to treat HIV and hepatitis C, than required in the mandatory essential health benefits package (EHB) that plans offered on the exchanges are required to provide. In a recent assessment of the qualified health plans offered on 15 different health insurance Marketplaces, 28 percent of plans did not cover all HIV medications and 19 percent of plans did not cover STRs. The plans that do cover these medications may impose burdensome utilization review and prior authorization requirements, increasing the difficulty of accessing these medications for consumers.

    Recommendations for Advocates: To ensure consumers have access to adequate coverage of specialty drugs, an amendment to the EHB rule is needed to require coverage of specialty drugs where no generic alternatives exists that are widely accepted in treatment guidelines or best practices. In addition, HHS must strengthen the non-discrimination provisions of the ACA to protect people living with HIV/AIDS against formulary designs that do not serve their needs. Insurers should be educated about the health and cost benefits of STRs and consumers should be educated about the importance of checking plan formularies to make sure their required medications are covered.
  3.  Unaffordable Cost-Sharing Structures: Many plans are placing all HIV medications on formulary tiers with very high levels of cost-sharing. According to Avalere’s recent analysis, 50 percent of HIV/AIDS drugs covered on plans offered through the exchanges and eligible for tax credits and subsidies are subject to an average of 36 percent co-insurance. The high levels of co-insurance required can make HIV medications prohibitively expensive for consumers, even with health insurance coverage. Adding to the cost burdens of individuals living with HIV/AIDS, health plans in North Dakota and Louisiana stopped accepting premium payments on behalf of their enrollees from Ryan White/AIDS Drug Assistance Programs (a special federal and state partnership program for individuals living with HIV/AIDS that can help individuals pay premiums and co-pays in some states).

    Recommendations for Advocates: To ensure consumers have access to affordable medications under the plans offered, further regulations at the state and federal level are needed to prohibit excessive co-insurance for specialty drugs where no generic alternatives exist that are widely accepted in treatment. Specifically, HHS should amend the EHB rule to prohibit excessive co-insurance for specialty drugs where no generic alternatives exists that are widely accepted in treatment guidelines or best practices. Regulators should clarify that all Marketplace plans must accept private co-payment assistance. Additionally, there is a need for state and federal laws that limit cost-sharing for specialty and brand-name (when there is no generic alternative) drugs and a requirement to provide information on co-insurance requirements so that consumers can understand the actual price of medications under the plans offered

Continued Advocacy is Critical: What Can Advocates Do?

Advocates can help mobilize provider groups and consumers to demand that insurers and regulations address individual consumer needs and end discriminatory practices that pose a barrier to meaningful coverage.

  • Focus on consumer education during this upcoming open enrollment period: Consumers must be educated about a range of issues, including understanding terms like “co-insurance” and “deductible’ as well as checking plan formularies to make sure their required medications are covered. This plan assessment tool allows enrollment assisters to evaluate plans for their clients living with HIV and to empower advocates to monitor the Marketplaces for potential discrimination.
  • Emphasis on consumer voices: When barriers to care—lack of transparency, inadequate coverage, or discriminatory cost sharing—are observed, advocates should consider filing complaints with state departments of insurance and demanding the enforcement of the non-discrimination protections in the ACA, which prohibit plans from employing discriminatory marketing practices and benefit designs or failing to meet EHB requirements. Advocates should also consider filing complaints with the Office of Civil Rights and to use the court system to put pressure on insurers to forgo discriminatory practices.

While there is much work to be done, advocates in several states have successfully protected and secured access to health care coverage that does not discriminate against people with HIV/AIDS. Stay tuned for the next blog in this series to learn more.

— Carmel Shachar and Malinda Ellwood, Center for Health Law and Policy Innovation, Harvard Law School