Back HIV Policy & Advocacy Doctors & Advocates Demand Better Health Coverage for HIV & Hepatitis

Doctors & Advocates Demand Better Health Coverage for HIV & Hepatitis


Coverage of preferred drugs in treatment guidelines, access to expert providers, lower co-pays, and clarity about patient assistance programs are among the steps HIV medical providers and patient advocates recommend to ensure that people with HIV and hepatitis C receive adequate care and treatment under the Affordable Care Act, according to separate statements released this week.

Nearly 23,000 HIV positive people will gain access to private health insurance plans and as many as 47,000 may qualify for expanded Medicaid programs under the Affordable Care Act (ACA) -- better known as Obamacare -- according to a recent report.

But some people with HIV and hepatitis C are already running up against barriers to getting the care they need. Some private insurance plans, for example, have included few antiretroviral drugs in their formularies, some are charging high co-pays for HIV and hepatitis treatment, and it is not clear whether pharmaceutical companies' patient assistance programs can cover people enrolled in insurance exchange plans.


HIV physicians and researchers from the HIV Medicine Association (HIVMA) and the American Academy of HIV Medicine (AAHIVM) this week issued a statement urging private health insurance plans and Medicaid managed care plans "to support high quality, cost-effective care" by adopting a set of 8 policy recommendations:

1) Follow HIV Treatment Guidelines: Cover all antiretrovirals according to the nationally recognized standard for HIV treatment. Antiretroviral medications are not interchangeable, and substitutions sometimes cannot be made even within drug classes. "Providers and their patients must have access to the full range of biomedical tools available to suppress this infectious and deadly virus," the medical associations urged.

2) Apply Reasonable Cost Sharing. Plans that place all or most antiretrovirals on the highest sharing tier discriminate against people with HIV and undercut the benefits of health insurance. "While antiretrovirals can be expensive, the adverse consequences of treatment disruptions, including drug resistance and virologic failure, lead to more costly interventions, such as hospitalization and treatment of opportunistic infections, and have long-term negative health consequences."  

3) Cover Single Tablet Regimens. All-in-1combination antiretroviral pills such as Atripla are among the mostly widely prescribed HIV medications and "typically are no more expensive than the sum of their component parts."

4) Avoid Cumbersome Prior Authorization Processes. "Such bureaucratic hurdles add administrative barriers and increased costs to the already complex delivery of HIV care."  

5) Institute Effective Pharmacy Practices: "For restricted pharmacy networks -- particularly those limited to mail order options, policies must be in place to meet the highest standard for timely dispensing of medications." The providers urge health plans to include AIDS Drug Assistance Program (ADAP) pharmacies in their networks and allow ADAPs to provide third-party premium payment and cost-sharing assistance.

6) Include Ryan White Providers in Networks: "We strongly recommend that health plans include all Ryan White medical providers in their networks to support continuity of care for these patients and to allow them to continue to benefit from the other key services that they offer."

7) Allow HIV Providers as Primary Care Providers: "We urge health plans to have policies that streamline access to HIV medical providers, including allowing patients to designate them as their Primary Care Provider and instituting standing referrals to HIV providers."

8) Implement HIV Quality Measures: "Following nationally recognized HIV care and treatment standards improves health outcomes and lowers health care costs."

Fair Pricing Coalition

In another statement issued this week, the Fair Pricing Coalition (FPC) highlighted some of the barriers to life-saving treatment for people with HIV and hepatitis C covered by ACA marketplace plans.

"Discriminatory practices by Qualified Health Plans (QHPs) in the health insurance marketplaces, exorbitant drug pricing by the pharmaceutical industry, and a lack of clear guidance from the federal government regarding the legality of co-payment assistance programs for QHP beneficiaries are proving to be major barriers to affordable treatment for HIV and hepatitis C," according to the advocacy group.

"The QHPs mandated by the Affordable Care Act are good news for many people living with HIV and/or hepatitis C, as it means they can’t be denied health insurance, because of pre- existing conditions," explained FPC co-chair Lynda Dee. "However, many plans are proving financially disastrous for people living HIV, hepatitis C, and other chronic diseases. This situation is made worse by high drug prices being set and increased annually by manufacturers, along with an inexcusable lack of direction from the U.S. Department of Health and Human Services regarding co-pay assistance programs for people receiving care under ACA-mandated plans."

FPC release a new policy guide, Health Insurance Marketplace Plans and People Living with HIV and/or Viral Hepatitis: The Success of the Affordable Care Act Requires Fair Drug Pricing and Access, which outlines drug pricing and access issues and recommended solutions.

Among the problems identified:

  • Some health insurance companies are not including certain standard-of-care HIV medications in their formularies.
  • Many QHPs are placing prescription medications for HIV and hepatitis C in "specialty drug" tiers that impose high out-of-pocket costs.
  • High prices of drugs used to treat HIV and hepatitis C are a key driver of medications being excluded or placed in the highest tiers.
  • QHPs are not being transparent about their drug formularies and cost-sharing requirements, making it difficult for patients to make educated plan choices.
  • Some drug manufacturers and not-for-profit payers are unwilling to extend their co-payment assistance programs to QHP beneficiaries because of conflicting government guidance. 

"These are major barriers to life-saving treatment, when in fact we need to be making access to affordable treatment as easy as possible," said FPC member Tim Horn. "Nationally, only 25% of people living with HIV are receiving HIV treatment and keeping the virus in their blood in check. This is essential in terms of protecting their own health and preventing ongoing transmission of the virus. We need to get more people on treatment, not fewer, which won’t be possible if they cannot afford their costly medications."

Among the possible short- and long-term solutions offered by the FPC:

  • Require access to all preferred and alternative antiretrovirals in the U.S. Department of Health and Human Services HIV treatment guidelines, as well as all FDA-approved drugs for hepatitis C.
  • Monitor tiers set for HIV and hepatitis C drugs for discriminatory practices, such as placing all recommended treatment options on the highest cost-sharing or specialty tiers.
  • Mandate QHP benefits and drug formulary transparency.
  • Confirm that manufacturers and non-profit payers may help defray out-of-pocket costs for medications under ACA through co-payment assistance programs.
  • Lower out-of-pocket spending caps for individuals and families with incomes up to 
250% of the federal poverty level.

Insist that insurance companies include people with HIV and hepatitis C expertise on their pharmacy and therapeutics committees or consult with disease experts regarding formulary and tier decisions.

"The FPC believes that the Affordable Care Act, while not perfect, has tremendous potential to redress disparities for U.S. residents whose access to healthcare has previously been at the whim of conflicting political and economic forces," said Dee. "This applies not only to HIV/AIDS and viral hepatitis, but also to many other chronic, debilitating, and costly health challenges beyond the capacity of individuals to manage on their own."



HIVMA and AAHIVM. Strategies for Health Insurers to Optimize Coverage for People with HIV: A Joint Statement from the HIV Medicine Association and the American Academy of HIV Medicine. Press release. February 6, 2014.

Fair Pricing Coalition. Fair Pricing Coalition Highlights Major Barriers to Life-Saving Treatment in Affordable Care Act Health Insurance Marketplace Plans. Press release. February 5, 2014.

Fair Pricing Coalition. Health Insurance Marketplace Plans and
People Living with HIV and/or Viral Hepatitis:
The Affordable Care Act Requires Fair Drug Pricing and Access. Fair Pricing Coalition (FPC) Policy Guide. February 2014.