Affordable Care Act, healthcare, LGBT — October 9, 2014 at 4:49 pm

How the high cost of HIV/AIDS drugs puts lives at risk — and what’s being done to change that


Even with insurance, some people can’t afford treatment or preventive medications. Advocates are working on solutions.

Imagine being diagnosed with HIV, the virus that can cause AIDS, and being reassured that with treatment there’s no reason for the quality or length of your life to be diminished.

Then imagine being told that the drugs you need to start taking right away could cost you upwards of $1,000 a month — and that’s with insurance. Without coverage, it could cost as much as $3,000 a month.

That’s the reality being faced by many people living with HIV/AIDS, due in part to the high cost of prescription medications.

It doesn’t help that some insurance companies are placing HIV/AIDS medications in higher price tiers, which means the patient has to pay a larger share of the cost. A lot of medications for chronic disease, such as diabetes and arthritis, are being placed into higher tiers by insurers. This not only goes against the spirit of the Affordable Care Act (ACA) by discriminating against people with pre-existing conditions, it puts essential treatment out of reach for many people.

What’s more, the practice of placing certain drugs in higher tiers is leading to a trend of “escalator pricing” — basing a new drug’s price on the existing price of treatment, which in many cases is already much higher than it should be. This will only continue to drive up costs.

This is a problem for anyone who needs prescription medication, but it’s an especially big concern for people living with HIV/AIDS, who are likely to face discrimination to begin with.

“Treatment is prevention,” says Todd Heywood, an HIV activist and reporter for Between the Lines and HIV Plus Magazine. “Treatment improves the health and longevity of the patient, and there has never been a single documented case of someone who’s on treatment and has an undetectable viral load infecting a partner.”

Treatment is essential to make a patient’s viral load — the level of HIV in the blood — undetectable. The Centers for Disease Control and Prevention (CDC) recommends starting treatment immediately after diagnosis, which is the best way to make sure patients live a full life and prevent further infections. But how can people do that if they can’t afford the treatment they need?

“If you can’t help people get their infection under control, you’re going against treatment guidelines and potentially exposing more of the public to the infection,” says Ryan Sullivan, policy director at Michigan Consumers for Healthcare. “Public health and health reform come to a junction here.”

In Michigan, health advocates are investigating how insurers are pricing HIV/AIDS medication and what actions to take to ensure that people can access the medication they need. It’s a different story in Florida, where two organizations have already filed suit against four insurance companies doing business in the state for placing HIV/AIDS medications in the highest tier — despite anti-discrimination protections under the ACA.

From the National Health Law Program (NHeLP):

‘The ACA provides robust consumer protections, including putting an end to discriminatory practices by health insurers,’ said Wayne Turner, NHeLP staff attorney. ‘But these insurance plans are running afoul of that by placing all HIV/AIDS medications in the highest tiers with exorbitant co-insurance and co-pays, and instituting other barriers to obtaining commonly prescribed HIV/AIDS medications. The companies are going out of their way to discourage people with HIV/AIDS from enrolling in their plans — a blatantly illegal practice.’

Fortunately for Michigan residents, the state has a robust HIV/AIDS Drug Assistance Program commonly known as ADAP. According to Heywood, someone making less than $64,000 a year qualifies for the program, which will pay for the drugs directly or cover co-pays. You can learn more about the program HERE.

Heywood commends the Michigan Department of Community Health on ADAP:

We’re incredibly lucky to have a health department that gets the fact that giving people access to meds can keep them alive. Even if you have coverage, you can get assistance with the co-pay under ADAP. This is especially important as we’re seeing HIV/AIDS drugs being placed into higher tiers. If a drug costs $3,000 a month retail and your co-pay is 35 percent, that’s an unaffordable option. With the ADAP co-pay option, you have zero cost.

He thinks it’s even more important to make sure people have access to PrEP: pre-exposure prophylaxis. According to Heywood, the anti-HIV drug Truvada is 99 percent effective in preventing infection in people who are HIV-negative if taken daily. But that drug is expensive, too, costing about $1,200 per month. The manufacturer, Gilead, offers a co-pay assistance program, but it’s often not enough to cover the cost under some insurance plans, especially when insurance companies place it in higher pricing tiers.

What’s more, says Heywood, getting on PrEP requires doctor’s appointments every three months and regular blood testing.

Many of the most at-risk populations don’t have a way to access medical care, and those that do have access often experience stigma and may not feel comfortable talking honestly with their doctors. But it’s incredibly important for patients to be proactive and stand up for themselves and change the dialogue with physicians.

New York and Washington state are already making Truvada available to low-income residents at a lower cost, and Heywood hopes others will follow suit. He’s not alone. In fact, there’s a global effort underway to make medication for HIV/AIDS — and all health conditions — more affordable and accessible.

“History has shown us that creativity can transform the way HIV treatment is distributed, now we need to apply that knowledge and change lives,” says Alison Lawton, CEO of Mindset Social Innovation Foundation and supporter of Access our Medicine.

“For that reason, we supported the launch of Access our Medicine in order to give every practitioner, patient and idea a voice. We invite each of you to sign the declaration that everyone should have access to affordable medicine.”

Sullivan seconds that idea, urging consumers to be involved in the dialogue.

Contact your representatives at the state or federal level, or give your story to a consumer advocate at an organization like ours — we need consumers to get into the fight. It’s as simple as sharing your story, even anonymously. Health reform is a continuous process.

You can share your story with Michigan Consumers for Healthcare online.

There’s one more very important way to join in the effort to end HIV/AIDS, which Heywood is confident can be done through prevention and treatment: get tested.

“Everyone should be tested every year, regardless of their level of sexual activity,” he says. “In fact, I encourage everybody to get tested every three months, which is free and confidential at AIDS organizations and local health departments. It also gets you connected with the right people in case you ever need care.”

Learn more about testing and prevention at

[Image credits: Top via Wikimedia Commons; bottom courtesy of Access our Medicine]