While millions were observing World AIDS Day last week, news broke the late Elizabeth Taylor ran a “Dallas Buyers Club” out of her Bel Air home in the early 1990s, illegally dispensing expensive experimental AIDS drugs to those who couldn’t afford them. It’s not surprising, knowing that Taylor, who co-founded the American Foundation for AIDS Research (amFAR) after her close friend and screen star Rock Hudson died of AIDS in 1985, was determined to save lives.
Thirty years later, there remains no cure for HIV, treatment is still expensive, and according to the Centers for Disease Control and Prevention (CDC), there are 1.2 million Americans living with HIV, (almost 13% unaware they are infected) 50,000 new cases are diagnosed every year, and more than 650,00 people have died with AIDS to date. In addition, a Kaiser Family Foundation report found 33% are not getting medical care and more than 70,000 lack health insurance.
There also remains a social stigma associated with HIV and a surprising lack of knowledge about its transmission. A 2012 survey by The Washington Post and the Kaiser Family Foundation showed 25% of Americans did not know HIV cannot be transmitted by sharing a drinking glass – almost the exact same amount of people as in 1987.
Yet, there was a glimmer of good news on Dec. 1 when Prudential Insurance announced it will be offering traditional life insurance policies to people living with HIV – making it the first major American insurer to announce traditional individual policies for otherwise healthy people who have HIV. This comes as advances in treatments are leading to longer life expectancies for those with HIV. Kaiser Health News reported those with HIV who are able to access and maintain medication have life expectancies well into their 70s. Although, as they age, they remain at increased risk for other medical conditions like cancer and heart disease.
Prudential officials told KHN individuals with HIV have mostly been excluded from life insurance beyond minimal coverage, with most employer policies paying out no more than $50,000. According to KHN, a positive HIV test can cause an automatic denial of higher-value individual term life insurance policies that require a medical review. This holds true also for applicants with an undetectable viral load.
Mike McFarland, vice president, underwriting for Prudential Individual Life Insurance said in a statement, “With advances in the successful treatment of people with HIV, we are now able to offer this population the opportunity to apply for life insurance – a milestone we see as a significant step in the right direction.”
The long, expensive road to treatment
Treatment for HIV has a long history of being expensive, often leading activists to take to the streets in protest. The first retroviral, zidovudine, AZT, became available in 1987 with an initial cost of $10,000 a year. Most couldn’t afford it and in 1989 ACT-UP, a New York City-based HIV activist group, staged a well-publicized protest. Burroughs-Wellcome lowered the price in response a few days later, but $6,400 a year was still well beyond reach for most. A 1989 The New York Times opinion piece titled “AZT’s Inhuman Cost,” stated, “AZT is said to be the most expensive prescription drug in history.”
By 1990, the federal government jumped in to provide assistance and the Ryan White HIV/AIDS Program was enacted. This is the largest federal program for people with HIV in the U.S. for those without insurance who cannot afford HIV medication. In FY 2012, federal funding for HIV/AIDS included $2.4 billion for the program, which is administered by the Health Resources and Services Administration (HRSA) of HHS. Each time it is reauthorized by Congress, some adjustments are made according to shifting needs. For example, in 2009, a national HIV testing goal of 5 million tests per year was set for the program and other federal programs, according to the Kaiser Family Foundation. HRSA estimates more than half a million people receive at least one medical or health-related support service through the Ryan White program every year.
As HIV treatments were developed and launched, it seemed as the price tag continued to escalate.
A key turning point in HIV treatment occurred in 1997 with the launch of Combivir, the first combination of two antiretrovirals (zidovudine and lamivudine) in one tablet that simplified HIV therapy. Often referred to as highly active combination therapy (HAART), researchers said it, “revolutionized the management of HIV treatment and rendered it a chronic manageable disease.” The current average price of Combivir is about $1,082 per month, according to the National Institutes of Health (NIH).
But the price of AZT and Combivir paled in comparison to Roche’s Fuzeon, which works differently from other previous HIV treatments in that it blocks the virus from entering healthy immune cells instead of stopping viral replication once inside the cells. Approved by the FDA in 2003, the protein-based injectable came with an extraordinary price tag of $20,000 a year in Europe and close to $25,000 in the U.S. This sparked a loud outcry from activists and politicians alike, who feared those who needed the drug (30% to 40% who were resistant to current drugs) couldn’t afford it.
Patient-assisted programs (PAPs) are standard for companies with extremely high-priced drugs. These provide free HIV drugs to those who do not qualify for other programs like Medicaid, Medicare, or AIDS Drug-Assistance Programs (ADAPs). Different companies have different eligibility requirements based on the Federal Poverty Level (FPL). There are currently eight large pharmaceutical companies that provide PAPs for their HIV treatments, according to an article in AIDSMeds. For those with private health insurance, many pharmaceutical companies also offer assistance with co-pays.
Prior to the Affordable Care Act (ACA) in 2010, several barriers prevented many with HIV from obtaining health insurance. Some of these included pre-existing condition exclusions, premium rates based on health status, and annual and lifetime caps on coverage. The promise of Medicaid expansion to provide insurance coverage to all those without it hasn’t been completely fulfilled as there are only 31 states that have opted to expand. This put many into the “coverage gap” – not eligible for Medicaid, but too poor to qualify for subsidies in the marketplace. However, under the ACA, for states that do expand Medicaid, those living with HIV who meet the income requirements no longer have to wait for an AIDS diagnosis to become eligible for Medicaid.
Advocates are fighting discrimination from health insurers. Two groups in Florida filed a complaint against health insurers last year, stating the drug pricing system in the state’s healthcare plans was discriminatory. The AIDS Institute and the National Health Law Program filed the complaint with the HHS’ Office for Civil Rights, stating four Florida insurers violated a provision in the ACA that prohibits discrimination based on medical conditions.
Although the groups focused on Florida, they said insurers nationwide had also discriminated against those with HIV. As part of the settlement, Cigna agreed to put a $200 a month limit on patient payments for common HIV prescription drugs, to eliminate the 30-day supply limit and move generic HIV drugs from an expensive category into a lower-cost tier. Prior to the settlement, Cigna had put HIV drugs on the highest payment tier for silver plans which required some patients to pay up to 40% of the cost of the drug, resulting in up to $2,750 in out of pocket expenses for more expensive drugs. Karen Eldred, a Cigna spokeswoman, said in a statement, “We will be looking into whether and how changes to the formulary structure might be appropriate in other states.”
Changes for a hopeful future
Dr. Tom Frieden, director of the CDC, called for more testing and targeted pre-exposure prophylaxis for high-risk groups and treatment in a recent article in the New England Journal of Medicine. Frieden noted despite progress over the past decade, "most people living with HIV infection in the United States are not receiving antiretroviral treatment, notification of partners of infected people remains the exception rather than the norm, and several high-risk behaviors have become more common." However, Frieden remains optimistic about reducing the number of HIV infections in the future. "Momentum has been generated by the recently updated National HIV/AIDS Strategy, which includes a goal of viral-load suppression in 80% of people with diagnosed infection, an executive order to improve the continuum of care, increased access to health insurance coverage through the Affordable Care Act, and a global focus on detection, treatment and viral-load suppression."