West Virginians find new HIV treatments expensive and difficult to obtain

By Autumn Shelton, writing for the “When All Are Counted” Project

“There’s a different way to treat HIV,” a recent commercial for ViiV Healthcare’s injectable drug CABENUVA begins. 

During the commercial, people are shown having fun under a colorful sky and spending an evening out with friends while a male voice discusses the injectable HIV medication CABENUVA. At the end of the commercial, that same voices states, “Ask your doctor about every other month CABENUVA.” 

Many West Virginians who are living with HIV (human immunodeficiency virus) have done just that with the hope that a new drug will take away their need for daily pills. Unfortunately, they are discovering that CABENUVA, like so many other expensive medications, is not that easy to obtain. 

According to three medical professionals who work with HIV patients throughout the state, Dr. Arif R. Sarwari, professor and associate dean of clinical affairs at the West Virginia University School of Medicine; Anne Behr, clinical coordinator and nurse educator at the Positive Health Clinic – a part of West Virginia University Hospitals; and Christine Teague, program director for Charleston Area Medical Center’s (CAMC) Ryan White Part C Early Intervention Services Program, insurance companies require prior authorization for CABENUVA, and this process, along with the appeals process, is time consuming. 

In a state with a current HIV outbreak, and where members of the LGBTQIA+ community face a tremendous stigma, the drug hasn’t yet been added to insurance companies’ preferred list of medications. 

The West Virginia Department of Health and Human Services (DHHR) Office of Epidemiology and Prevention maintains data related to HIV outbreaks, and it is updated bi-monthly. Information found on the website states that in 2019, Cabell County became the “epicenter for a large HIV cluster,” with Kanawha County also experiencing an outbreak shortly after. At the end of 2022, Kanawha and Cabell counties reported a total of 88 new cases. As of July 27, there have been 26 new cases reported collectively in those counties just this year. 

Teague, who has over two decades of experience at CAMC, stated that while most of the new cases are a result of injectable drug use (IDU), being a member of the LGBTQIA+ community is also a risk factor. 

“Eighty percent of our new cases last year were in the injectable drug use population,” Teague said. “So, it is now the most common risk factor that we see.”  

CAMC’s Ryan White program serves over 500 patients throughout 19 of West Virginia’s southern counties, with three clinic locations, Teague explained. One clinic is located at CAMC Memorial Hospital in Kanawha City, one is in Beckley in Raleigh County, and one clinic is a mobile medical unit that is used to treat those, such as unstably housed people, who are unable to visit a physical location. 

“The mobile clinic is primarily dealing with the outbreak in Kanawha County,” Teague said. “We take it to the westside of Charleston (every Tuesday afternoon), which is one of the areas where many in the outbreak are living.”

She noted that while prevention is key to stopping the current outbreak, it is also important to ensure that those living with HIV receive appropriate care and access to medication. 

“The medicines that we have now are so good that the viral load becomes undetectable, and folks aren’t transmitting that much in that population,” Teague explained. However, she said that increased HIV testing is imperative to stop the spread. 

“We are trying to promote that now in primary care provider offices and in corrections,” she stated, adding that, unfortunately, there isn’t a designated community center to track testing in the LGBTQIA+ population. 

“We do rely on private doctor offices and health departments to take up that slack and make sure they are doing a sexual history on everybody that comes in the doors. But, right now we don’t have nearly the same numbers of people who walk in our doors with sex as a risk factor,” Teague said. “In the LGBTQ community people are somewhat a little bit more educated about HIV risks. In the IDU population everyone seems to think HIV is only spread in the LGBTQ community. They have no idea they are at risk.” 

For patients who have been diagnosed with HIV, Teague said that today’s medications have become much better than the treatments that were available prior to 1995, and HIV can be effectively managed. 

Now that CABENUVA has entered the market, it is another step forward in treating HIV. 

“It was meant for those who are tired of taking a pill every day, or who have trouble remembering to take a pill every day. But it has to be administered in a doctor’s office as a deep intramuscular injection,” Teague said. “There is a procedure that goes along with that, and it’s more expensive than oral medication.” 

For example, the number one prescribed HIV oral medication is BIKTARVY – with an out of pocket cost of about $36,000 per year, she continued. For CABENUVA, the cost rises to $50,000 per year. 

“However, one must consider the add-on provider charge, clinic charge and other charges that go with CABENUVA,” Teague explained, adding that through a private insurer, or through Medicare Part D, a patient could pick a plan that would help pay for the medication. 

“It’s really people with Medicaid who have the biggest problem accessing CABENUVA because it’s not on Medicaid’s formulary,” Teague said. 

Dr. Sarwari, who serves as medical director of WVU’s Positive Health Clinic located in Morgantown, shares some of the same concerns as Teague, and explained that it’s not uncommon for insurance companies, including Medicaid, to not take on new medications right away. 

But, CABENUVA, which was approved by the Food and Drug Administration (FDA) in 2021, is not “necessarily new,” Sarwari said. 

“It’s not a new drug in the sense that these are brand new drugs we don’t know about,” he explained. “These are formulations of drugs that we have used that are now injectable and that allow a patient to not have to remember to take a pill once a day.” 

“All HIV medicines that are currently available are very, very effective,” Sarwari continued. “Our standard treatment of HIV has essentially become one pill once a day, and the pill is usually a combination of two, three, or four HIV medicines. CABENUVA has become available to give two injections every month, or every other month, instead of having to take a pill.”

Sarwari said the biggest problem that he sees happening with CABENUVA is that insurance companies have not placed the drug on their list of covered medications – referred to as their “list of formularies.” 

“It costs tens of thousands per year for CABENUVA, but all HIV medicines are expensive,” Sarwari noted. “The cheapest generic still costs $150 per month, and brand name medicines are much more expensive.”

However, with CABENUVA, the combined cost of the medication and the office visit leaves many insurance companies asking, ‘Why should we pay out so much for a drug that is already available?’ 

According to Sarwari, even though the cost is high, CABENUVA should be made available to more patients who have various reasons for wanting to take it instead of a daily pill. 

“Access to medication is a barrier that we shouldn’t have,” Sarwari concluded. 

Anne Behr, who has extensive experience working with HIV patients at the Positive Health Clinic, also believes that CABENUVA should be more accessible. 

“We have a lot of our patients ask for CABENUVA,” Behr said. “CABENUVA is an exciting new option for patients, but it isn’t necessarily the best option for all patients. 

“I wish it weren’t so difficult to get for patients who really want it,” she added. “I spend a lot of time getting prior authorizations and appeals for denials, and it takes months sometimes to get somebody a final approval and switched over. I wish that would magically go away.” 

There are about 350 patients being treated at the Positive Health Clinic, which is also funded through the Ryan White program, according to Behr. The clinic covers 33 counties in northern West Virginia. 

“Sixty percent of our patients report their HIV risk factor as men who have sex with men (MSM),” Behr explained. “Seventeen percent of our patients report injection drug use. We also have patients that report both hetero and MSM, or IDU and MSM, and that can make it tough to clarify things.” 

Most of her patients are on Medicaid, Behr noted, adding that West Virginia’s Medicaid expansion directly benefited many patients years ago. 

“I certainly hope that, moving forward, they will have as robust of Medicaid availability as possible,” Behr stated. 

Yet, she said that the decision to keep CABENUVA off the Medicaid formulary list affects her patients. 

“It almost seems as if they are considering CABENUVA a medication for treatment failure–which is exactly what it’s not meant for,” she said. “It’s not meant for someone with significant resistance who has failed a bunch of other meds. It’s for somebody who is stable, has undetectable viral load, no known resistance, and they simply want to go from taking a daily pill to monthly or every other month shots.” 

For those who have private insurance, or Medicare Part D, the Ryan White program can help with copays, Behr added. For those who have no insurance, but need HIV medication, the state’s Aids Drug Assistance Program (ADAP), out of Ryan White part B funding, can help. 

“This is a safety net to make sure that patients have access if they have no other way to obtain it (HIV medication),” she added. 

Behr said that as she counsels patients on CABENUVA, she lets them know that they would need to come into a clinic at least six times a year, in addition to the two visits per year for lab work and a checkup. 

“This is a new commitment,” Behr said, adding that things like taking a day off from work, the added cost of gasoline, or winter weather must be considered. 

“I want to make sure patients consider all of that.” 

Even with those extra doctor visits, Behr said that patients who have been approved for CABENUVA say it feels “liberating,” because they don’t need to remember to take medication every day. 

“To get rid of that daily pill is pretty significant,” Behr said. “Older patients, who remember the treatment in the 1990s, feel fortunate to live in a time when they can benefit from technology. They remember how bad it used to be.” 

“For a lot of patients – it’s hard to have a daily reminder of their infection,” Behr added. “I don’t think people feel stigmatized for their insulin or their blood pressure medicine, but these patients can often have bad feelings–bad memories–taking their HIV pill every day, and I don’t think that’s something that necessarily you see with other chronic conditions.” 

This article was originally published on July 31 by Think Kids.

Autumn Shelton is a reporter with the West Virginia Press Association and a native of West Virginia. Her work has appeared in numerous print and digital publications throughout the state.

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