The Affordable Care Act and People with HIV and Hepatitis


The Patient Protection and Affordable Care Act (ACA) is the largest overhaul of the U.S. healthcare system since the introduction of Medicare and Medicaid in 1965.

While it promises to provide coverage for many people who previously could not obtain or afford insurance, some will face "sticker shock." People with complex health needs -- such as people with HIV or hepatitis B or C -- risk falling through the cracks, and the fate of existing AIDS programs remains unknown.

See also: Have We Been Duped? The (Un)Affordable Care Act

Enacted in March 2010 after a bruising legislative battle, the ACA is scheduled for full implementation next year. New state health insurance exchanges or "marketplaces" will open for enrollment on October 1, 2013, and coverage can start as of January 1, 2014.

The ACA will require that all individuals purchase health insurance or obtain coverage through their employer; those who do not will face a fine. Businesses with more than 50 employees must provide insurance for full-time workers, but this provision has been delayed. Subsidies will be provided to help make private insurance affordable, and more people -- everyone with incomes up to 138% of the federal poverty level (about $15,800 for an individual or $32,500 for a family of 4) -- could potentially become eligible for Medicaid.

Some ACA provisions have already gone into effect, including free preventive services (including routine HIV testing and HCV screening), Pre-existing Condition Insurance Plans (PCIPs), and a provision allowing young people to remain covered by their parents' insurance up to age 26.

People with HIV or Hepatitis

Experts estimate that only 17% of people living with HIV have private insurance. Many are covered by Medicaid -- the joint federal-state program for qualified low-income people and people with disabilities -- but nearly 30% do not have any coverage at all.

One of the major benefits of the ACA for people with HIV and viral hepatitis is a ban on insurance exclusion due to pre-existing conditions. Prior to this provision going into effect in 2014, the law has provided for PCIPs, first in participating states and now at the federal level.In addition, insurers may no longer cancel or rescind coverage once people develop expensive conditions, and there are new restrictions against lifetime coverage caps.

Medicaid expansion will help many more people with HIV and hepatitis, including non-disabled single adults without children who meet income eligibility requirements. There has also been discussion about making Medicaid more widely available to HIV positive people who have not yet progressed to AIDS -- as most will not if they can access and stay on effective antiretroviral treatment. For those on Medicare, the national health program for seniors, the ACA will lower prescription drug prices and reduce the infamous "donut hole" until it is finally eliminated in 2020.

All private insurance plans in state exchanges will be required to cover at least 1 drug in each United States Pharmacopeia category and class, and must include a mechanism to request coverage for medically necessary therapies that are not included in a plans standard listing, Melissa Harris from the Center for Medicaid and CHIP Services explained during a CMCS/HRSA webinar on August 28. In general, states have not yet specified their formularies for HIV and hepatitis treatment.

Relative to most diseases, people with HIV/AIDS have access to a variety of specialized services, often hard-won by activists during the early years of the epidemic. Some of these programs are funded under the Ryan White Care Act, including state AIDS Drug Assistance Programs (ADAPs) that cover the cost of antiretroviral drugs and, in some states, related services such as monitoring tests and even private insurance premiums and co-pays.

Unfortunately, as the ACA exchanges are getting ready to launch, the fate of the Ryan White Care Act and the programs it covers is unclear. ADAPs -- intended as the "payer of last resort" -- currently pays for HIV drugs for people without adequate insurance coverage. Most pharmaceutical company Patient Assistance Programs also offer reduced prices or free drugs only for people with no other means of coverage. That pool of uncovered people should shrink substantially once the ACA is implemented.

Some Left Out

In June 2012 the U.S. Supreme Court upheld the ACA's individual mandate requiring everyone to buy insurance. However, it declined to require states to broaden Medicaid, a joint federal/state program. Despite substantial federal subsidies, about half the states have indicated that they will not participate in the Medicaid expansion.

Largely in the Midwest and Southeast, these states are home to some of the highest rates of poverty and a majority of would-be eligible African-Americans -- the population with the highest rate of new HIV infections.

"We are concerned that the states likeliest to refuse to implement expansion are states with rapidly growing epidemics in under-insured and under-served populations of color," the now-defunct National Association of People with AIDS said in a statement responding to last year's Supreme Court decision. "The fiscal incentives provided by the federal government are generous to a point where it would be unconscionable and inexcusable for a state to fail to provide its low-income residents with health coverage."

The ACA covers U.S. citizens and legal residents who have lived in the country for at least 5 years, leaving out undocumented immigrants. Undocumented residents in states such as California that currently provide some medical care to immigrants could actually end up worse off under the new law.

Finally, despite its name, some people -- especially older middle-income individuals -- may not find the ACA very affordable. This will include some people with HIV who do not qualify for subsidies or low-income benefits, as Matt Sharp explains in an accompanying article.

Affordable or Not?

The ACA requires that states establish exchanges to enable individuals and families without employer coverage to comparison shop for insurance policies. There will also be Small Business Health Options Program (SHOP) marketplaces, though businesses with fewer than 50 employees are not required to offer coverage. Many states are prepared to open their exchanges for enrollment in October as scheduled, but as with Medicaid expansion, others are dragging their feet.

The law requires that all policies must cover a comprehensive package of 10 services known as essential health benefits (including, for example, emergency services, maternity care, prescription drugs, and rehabilitative services). But plans are divided into tiers -- Bronze, Silver, Gold, and Platinum -- based on the relative cost of premiums, deductibles, and co-pays.

Bronze plans have a high overall deductible of $5000 per year, higher co-pays for doctor visits and lab costs, deductibles for brand name drugs, and will pay for 60% of covered health expenses. At the other end, Platinum plans have no overall or drug-specific deductible, low co-pays for services, and cover 90% of covered expenses. While not as spartan as existing "catastrophic" plans, lower-tier options may be preferable for healthy people who do not expect to need many services.

According to Covered California (, which administers that state's health exchange, the monthly premium for a Bronze plan for a 30-year-old in San Francisco runs about $250, with a choice of 4 available plans. Premiums for Silver, Gold, and Platinum plans are approximately $330, $400, and $450, respectively. For a 40-year-old, the corresponding premium prices are approximately $300, $375, $450, and $500.

Prices rise substantially at older ages. Premiums for a 50-year-old are approximately $400, $525, $630, and $700 for Bronze, Silver, Gold, and Platinum plans. For a 60-year-old, prices take another steep jump, to about $600, $800, $950, and $1100, respectively. Fortunately, eligibility for Medicare -- the federal program that covers seniors -- kicks in at age 65.

ACA premiums in California are higher than some other states. In Portland, Oregon (, for example, Bronze, Silver, and Gold plans for a 40-year-old run about $250, $300, and $350, on average. Smokers in most states can expect to pay a substantial surcharge.

The federal government will provide subsidies to help individuals and families pay for insurance. Subsidies decrease as income rises, ending at 400% of the federal poverty level, or an adjusted gross income of about $46,000/year for a single individual. The national median personal income for full-time workers is around $40,000, according to the Bureau of Labor Statistics.

While the ACA will make insurance available for more people and lower the cost for many, some older middle-income people with no employer coverage will face costs that are hard to describe as "affordable." A 60-year-old Californian with an adjusted gross income of $50,000/year who selects a Silver plan, for example, could theoretically pay about $9600 annually in premiums -- nearly 20% of income.

The good news is that plans must cover mandated services and all plans in a given tier offer comparable costs and benefits, making it less likely for people to get lost in the fine print and find themselves uncovered for an important service when they need it.


The ACA is exceedingly complicated legislation with a large number of provisions. Multiply that by 50 states -- and take into account variations in age, family size, income, region, smoking status, and other factors -- and the complexity increases exponentially.

It is difficult to make generalizations about benefits and disadvantages for specific individuals, as everyone's situation is unique. The ACA provides funding to government and community organizations for "navigators" who will help people choose the health plan that's right for them.

[Editor's note: Links to new resources have been added since initial publication and more will be added as they become available]

  • The federal government offers a website,, that contains a wealth of information about the ACA and its implementation.
  • includes links to state marketplaces websites.
  • The and websites also provide information on how the ACA will affect people covered by these programs.
  • The Health Resources and Services Administration (HRSA) offers another useful website, Ryan White & the Affordable Care Act: What You Need to Know.
  • Kaiser Family Foundation (KFF) provides a Subsidy Calculator to illustrate health insurance premiums and subsidies for people purchasing insurance on their own through the new exchanges.
  • A recent KFF report compares exchange plan premium prices in more than a dozen states where they have been disclosed.
  • The Well Project provides detailed information about how the ACA will specifically help HIV positive women.
  • The HIV Medicine Association offers a useful fact sheet, Preparing for Health Care Reform.
  • -- developed by the AIDS Foundation of Chicago in partnership with Project Inform, the Treatment Access Expansion Project, HIV Medicine Association, HIV Prevention Justice Alliance, NASTAD, San Francisco AIDS Foundation, and others -- educates the HIV community about the ACA via a blog, webinars, and other resources.


Sources The Affordable Care Act and HIV/AIDS. Updated March 29, 2013.

HRSA. Ryan White & the Affordable Care Act: What You Need to Know.

The Well Project. The Affordable Care Act and You! July 2013.

CMCS and HRSA. The Intersection of the Ryan White HIV/AIDS Program with the Essential Health Benefits in Private Health Insurance and Medicaid. Webinar. August 28, 2013.