Yesterday, Margot Sanger-Katz of The New York Times reported on a recent survey of the problems Americans face with medical bills. The survey, conducted by The New York Times and the Kaiser Family Foundation, shows a cascade of financial troubles due to many individuals and households paying substantial medical bills. In the survey, 20 percent of people under age 65 with health insurance reported having problems paying their medical bills in the last year, compared with 53 percent of people without health insurance reporting such problems.

I would like to reflect on this survey from my perspective working on national HIV policy. Medical costs have always been a challenge for people living with HIV. The cost of HIV treatment generally ranges from $2000 to $5000 per month, but health conditions that are commonly comorbid with HIV, such as cancer or problems with the heart, bones, or kidney, can result in greater overall treatment cost. Antiretroviral drugs are the most expensive part of HIV treatment. Even with insurance, many people find it difficult to buy the HIV drugs they need due to co-payments, deductibles, and/or co-insurance.

The Affordable Care Act (ACA) has expanded insurance access for people living with HIV. Although this law is not perfect, the ACA is making HIV treatment more affordable for people living with HIV. Health plans can no longer deny insurance coverage to people living with HIV or impose annual limits on coverage. Moreover, as Sanger-Katz mentions, the ACA has led to a decline in the number of Americans suffering financial stress from health problems.

It is unfortunate that Sanger-Katz fails to mention that the ACA also established an annual cap on out-of-pocket spending. Prior to the ACA, it was possible to incur hundreds of thousands of dollars in medical expenses in a single year. In 2016, once an individual or household pays enough in co-payments, deductibles, and co-insurance to reach the out-of-pocket maximum of $6,850 or $13,700 respectively, the health plans pay for all the remaining healthcare costs for the year. This is a major achievement toward addressing financial troubles.

Despite the strengths of the ACA, paying medical bills is hard for many people living with HIV, including those with insurance. One common problem is that people living with HIV often have to pay thousands of dollars upfront in deductibles rather than have the cost of their medication spread throughout the year. For those living on tight budgets, this upfront cost means that some people delay treatment until they can pay, use up all or most of their savings, or borrow money. It also affects people’s daily lives, including their ability to pay for housing, food, and childcare.

People living with HIV also have financial troubles when insurance premiums and co-payments add up to make HIV care unaffordable or when big medical bills are not covered by insurance. The ACA’s annual cap on out-of-pocket spending does not count premiums, balance billing amounts for non-network providers and other out-of-network cost-sharing, or spending for non-essential health benefits. As a result, insured patients can struggle to pay their bills.

This is all the more true for people living with HIV in “narrow network” plans, i.e., health insurance plans that place limits on the doctors and hospitals available, and in “adverse tiering” plans, i.e., health insurance plans placing classes of drugs on tiers with high co-payment and co-insurance levels. When plan networks have too few specialty HIV care providers, they have the effect of denying lifesaving care. An alternative consequence is financial hardship for those who can only get appointments with non-network providers. Likewise, when health plans engage in adverse tiering by putting HIV drugs on the top tier of formularies, people living with HIV are forced to pay higher medical costs.

Concerns about out-of-pocket medical costs for HIV and other chronic conditions have prompted a move to cap out-of-pocket drug costs. In October 2015, California passed legislation to cap a single 30-day outpatient prescription at $250, except for consumers with high-deductible plans, who pay $500. Such legislation maintains access to needed specialty drugs without placing an unreasonable burden on health plans since insured patients still pay their share of the costs on a monthly basis rather than all upfront.

While capping out-of-pocket costs helps to protect against some of the high cost of HIV care, it is insufficient to address the myriad of issues that people living with HIV confront. The Ryan White HIV/AIDS Program, the largest federal program focused exclusively on HIV/AIDS, remains a critical part of making HIV care affordable. At times, some have questioned whether the Ryan White program will be necessary after the ACA is implemented. Yet, some people cannot pay medical bills despite having insurance. Seventy percent of Ryan White clients have insurance coverage and rely on the program to supplement limits in their coverage or help with co-payments, deductibles, and/or co-insurance. The Ryan White program also provides a range of services needed to keep people living with HIV engaged in care and on treatment that neither the ACA or state legislation currently provides.

Much work still needs to be done to make access to affordable care a reality. Change never comes fast enough, but we must continue efforts to build upon the successes of the ACA. I believe that the Ryan White program is likely to act as the fulcrum of such efforts related to HIV and may serve as a model for making medical and support services affordable, accessible, and effective for all.