While the health care rights of low-income individuals living with chronic illnesses are under attack by interests seeking to undermine the Affordable Care Act, advocacy by Harvard Law School’s Center for Health Law and Policy Innovation (CHLPI) has directly led to one health insurance provider making a significant change to protect its patients.

This particular advocacy campaign began in 2014, at the start of the first Affordable Care Act open enrollment period for Marketplace private health insurance plans. At the time CHLPI clinical staff and students, in collaboration with several community-based partners, assessed newly available subsidized health plans to determine if they met the care and treatment needs of people living with HIV and other chronic health conditions.

“We realized we needed to let insurers know that they’re being watched and are accountable for their decisions. Failing to cover many essential medications and charging unreasonable costs for those that are covered by placing HIV medications on the highest consumer cost-sharing tier is discriminatory and inequitable,” says Robert Greenwald, clinical professor of law and director of CHLPI.

Three particular barriers were identified: the plans were not transparent enough to give consumers the information they need to make informed enrollment decisions; necessary services and medications were often not covered; and, perhaps most important, in many cases the cost of life-saving medications were unaffordable for many low-income consumers.

As a result of its findings, CHLPI contacted 24 insurance providers, and using concerns over HIV coverage as the case study, demonstrated to insurers the need for increased transparency, expanded coverage of necessary treatments, and reduced costs.

The first round of engagement by CHLPI staff and students opened up a dialogue with insurers and led to some reforms. Marketplace plans became more transparent and coverage of some essential medications increased. Coverage of single-tablet regimens (STRs), for example, changed dramatically. At the start of open enrollment, the majority of new ACA Marketplace insurers did not cover STRs, medications that significantly reduce daily pill burden, increase treatment adherence, improve health outcomes, reduce transmission rates, and lower health care expenditures. Successful advocacy led to the overwhelming majority of insurers (79% of those engaged in CHLPI’s advocacy efforts) agreeing to cover these medications.

According to Greenwald, while these were important improvements in coverage, CHLPI wasn’t successful in getting any of the insurers to lower the consumer co-insurance costs of these medications. “So, to some extent, it felt like a pyric victory with insurers now covering medications that many people still couldn’t afford,” he said.

At the start of the second ACA Marketplace open enrollment period in 2015, CHLPI initiated another round of engagement with insurers. The focus remained on transparency, coverage and cost concerns, with an emphasis on the importance of addressing the discriminatory placement of essential medications on the highest cost-sharing tiers. Three months later, some progress has been made.

This month, Kaiser Permanente (KP), the largest managed care organization in the United States, responded to CHLPI’s outreach efforts, stating that they had reviewed their policy and decided to move HIV drugs from the specialty pharmaceutical tier to a lower-price tier within their insurance plans in California. This reclassification means that tens of thousands of their California-based patients are no longer required to pay a high coinsurance payment in order to access critical HIV medications. The effect of this policy change means hundreds of dollars less per month/per prescription for many people living with HIV/AIDS and for some may mean the difference between life and death.

“The results of our outreach and advocacy efforts aimed at increasing access to care and treatment for vulnerable populations have been encouraging,” says Michael Wysolmerski 16. “As a clinical student in CHLPI, I have had the opportunity to work with individuals who are struggling to get the care and treatment they need as well as with national and state level advocates who are doing all they can to effect change. The experience is great, and this victory is important for all of us.”

For CHLPI students and staff it is heartening to see KP leading the way down a new path of more affordable treatment coverage. Right now, others insurers have the opportunity to follow suit and to do the right thing. While for now many are choosing the opposite approach, CHLPI is going to make sure that insurers keep hearing and responding to the strong message that care and treatment to low-income people living with chronic health conditions needs to be both accessible and affordable.