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Why Tina Smith is trying to get Congress to do more to prevent — not just treat — HIV/AIDS

Minnesota Sen. Tina Smith, who has long been an advocate for better healthcare funding in the U.S., introduced a bill in December that would give HIV doctors and activists what they’ve long been asking for; resources to help stop the spread of the disease. 

Sen. Tina Smith
Sen. Tina Smith: “This will help everybody, but it disproportionately helps folks who tend to have worse insurance or high deductibles, and that is important.”
Kevin Dietsch/Pool via REUTERS

Though the COVID-19 pandemic has overtaken hospitals around the country as well as dominated the media, another decades-long epidemic has continued to exist despite access to medication that could completely eradicate it.

The HIV/AIDS epidemic, which took off in the U.S. in the early 1980s, is still very much a concern to doctors and public health officials, who say that federal funding is paramount to ending the illness.

Currently, there are federal programs that dole out money to states to help fund medication for those who already have HIV, but doctors and HIV/AIDS activists say that treating the disease after it’s already been contracted doesn’t do enough to stop its spread. Instead, they say there’s a need for federal funding for preventative medicine, which can be prohibitively expensive even for people with health insurance.

Minnesota Sen. Tina Smith, who has long been an advocate for better healthcare funding in the U.S., introduced a bill in December that would give HIV doctors and activists what they’ve long been asking for.

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“Too often federal policy is informed by a judgmental approach to people’s health rather than a public health approach, which is to figure out what we need to do to prevent the spread of disease rather than judging the people who are living with the disease,” Smith said. 

Nationwide, there are approximately 1.2 million people living with HIV/AIDS. In Minnesota, according to the state Department of Health, as of Dec. 31, 2020, there were 5,247 residents living with HIV and 4,175 living with AIDS.

How Smith’s bill would add to current HIV/AIDS legislation

The largest federally funded HIV program in the U.S. was enacted by Congress in 1990. The Ryan White Comprehensive AIDS Resources Emergency Act made federal funding available for low-income, uninsured and underinsured people to be treated for HIV. The act was named after Ryan White, an Indiana teenager who contracted AIDS through a blood transfusion. White was diagnosed at age 13 and became a well-known advocate for AIDS research and testified before Congress in support of the bill. White died at age 18 just a few months before the bill officially passed. 

The Ryan White Act expired in 2013, but funding continues through appropriations. 

Though HIV/AIDS advocates are happy that the Ryan White program still receives funding, many say it’s not doing enough to prevent the spread of HIV — Ryan White only provides funding for HIV treatment, not prevention.

There are some other federal programs like the Housing Opportunities for Persons With AIDS program and HIV prevention programs run out of the Centers for Disease Control and Prevention. Minnesota gets money through both of these channels, but funding is prioritized to states with the greatest HIV caseload

“This is great because those areas need funding, but it does mean that states like Minnesota lose out on that money,” said Matt Toburen, executive director of the Aliveness Project, a community center that supports people living with HIV in Minnesota. Toburen said a major contributing factor to some states’ higher HIV rates was their failure to expand Medicaid under the Affordable Care Act

“Medicaid expansion is covering low income single adults who tend to be a higher risk population for HIV,” Toburen said. “Having access to that health care can be a real game changer for preventing HIV at a national level.”

Despite Minnesota’s lower overall HIV rate as compared to other states, there have been recent outbreaks of HIV in Hennepin and Ramsey counties as well as in the Duluth area. 

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With HIV outbreaks still occurring despite many advances in modern medicine that can make HIV undetectable and untransmittable, advocates say that there’s not enough federal funds and resources being put towards an epidemic that is preventable.

Smith said that’s why she introduced her new bill.

“HIV/AIDS is still a terrible, terrible disease. We have the tools to stop it, and yet, not enough people have access to those tools or even really know that they exist,” Smith said. “Understanding that and the terrible impact that it has on people in Minnesota and around the country — that there are people who know that these medicines could save their lives but can’t afford them — it just seems so completely wrong to me.”

Smith’s bill, called the PrEP Access and Coverage Act, would federally mandate that HIV prevention drugs like PrEP (Pre-exposure prophylaxis) and PEP (Post-exposure prophylaxis) and any associated costs be covered by health insurance. PrEP is a drug taken to prevent getting HIV and is recommended for high-risk individuals. PEP is an antiretroviral drug taken after a high-risk event or known exposure to HIV that stops HIV seroconversion.

The bill applies to health insurances that are regulated by the federal government, like Medicaid or TRICARE, which are healthcare systems that tend to reach people who are in higher risk categories for HIV, including people experiencing homelessness or housing insecurity and people with lower incomes.

Smith’s bill would also prohibit health insurance companies from requiring prior authorization and prevent them from increasing premiums or denying coverage if a patient is on HIV medications.

“This will help everybody, but it disproportionately helps folks who tend to have worse insurance or high deductibles, and that is important,” Smith said.

In addition to expanding access to HIV prevention drugs, the bill also focuses on community public health campaigns. But even with funding from Smith’s bill, there are many existing barriers that prevent people from accessing the HIV medication that they need.

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Insurance companies make it difficult to access to HIV prevention drugs in Minnesota

Dr. Keith Henry, who opened Minnesota’s first HIV/AIDS clinic in 1985 and is now the the HIV research director at the Hennepin County Medical Center, said that although HIV treatment has improved by leaps and bounds since he began practicing, a failure of the U.S. healthcare system has led to barriers that now stand between people at-risk for HIV and receiving preventative treatment.

“The U.S. healthcare system is a profit driven, terrible enterprise,” Henry said. “It’s not patient focused, it’s profit driven. If you’re poor or have lousy insurance or no insurance, you’re in big trouble.”

Henry said he and the other practitioners at his clinic face issues with insurance companies daily as they try to give patients access to drugs like PrEP. For those without health insurance, the process for receiving preventative HIV care can be incredibly complicated. But even for patients with health insurance, doctors like Henry and the nurses at his practice struggle to navigate the insurance system and get patients the care they need.

Insurance companies will often want a patient to use a cheaper version of PrEP drugs than the name brand (Truvada or Descovy, for example) in order to cut costs. Especially at the beginning of the year, when many people’s deductibles start over at zero, insurance companies often request that patients switch from a name brand version of the drug to a generic version. If a patient wants to stick with the medication they’ve already been using, they will often need to get prior authorization for the drug, meaning that their doctor will have to prove that they have had an adverse reaction to the generic drug or that they have kidney issues.

“Since there’s a generic version of Truvada available, the insurance company will want to cover that, but they’ll still give the patient a high copay of $165 (per month) until they reach their deductible,” said Katie Dannewitz, a public health nurse at Henry’s clinic. And that’s just for someone who has health insurance.

If a patient isn’t able to get prior authorization for Truvada, Dannewitz said that the patient has to switch to the generic version of the drug, which is a higher level of medication than they would have been taking with Truvada.

“It just requires the patient to accommodate the insurance company by changing their medication, taking more medication, and then applying for another program to help pay for their copay,” Dannewitz said.

After going through that process with insurance, Dannewitz said that she often has to spend hours of clinic time calling around to different pharmaceutical companies that have payment programs for specific medications, then calling around town to find out which pharmacies have the specific medication in stock, and potentially having to send patients to a couple of different pharmacies depending on which areas have which drugs in stock.

A patient has a three day window from the time of exposure to HIV to get preventative medication, so time is of the essence. 

“It’s time sensitive,” Dannewitz said. “You want them to start the medication as soon as possible.”

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Education and stigma prevent people from getting needed HIV care

In addition to barriers presented by insurance companies and medical practitioners’ struggles to get patients the preventative care they need, stigma and a lack of education around HIV/AIDS can be just as much of a barrier to receiving care.

Dylan Boyer, communications and event manager at the Aliveness Project, said that there is a “huge lack of education” around what drugs like PrEP are and who they are for.

“Just this past year at our Twin Cities Pride festival, we hosted a little booth and were launching our PrEP clinic, and so many people were like, ‘I thought that was just for gay guys,’” Boyer said. He realized that he had to explain that PrEP is for everyone. “Trans men and trans women especially have a higher risk of (contracting) HIV compared to other communities. And so while gay men are still a very high risk community, it’s really important that we make sure that people know that PrEP is for every person.”

Though times and attitudes have advanced, HIV/AIDS remains a stigmatized condition. Its most common methods of spreading can often be shrouded in cultural shame and fear. This can lead to people being afraid to speak with their doctor about HIV risk, but it has also led to some lack of education even within the medical community.

“One thing that I think stands in the way (of ending HIV) is just getting all the primary care providers educated,” said Dr. MJ Kasten, associate professor at the Mayo Clinic college of Medicine and Science and consultant on the Mayo Clinic HIV focus group.

 “STI (sexually transmitted infections) testing has been very expensive for people in the southern Minnesota health systems to access,” Kasten said. “But I think for a lot of patients, they’re not going to think about going to an HIV clinic, and they’ll never come to Mayo for PrEP. And the primary care providers who are seeing these people aren’t really up to speed with approaching the topic with every patient whether they think the patient might need PrEP or not. (Asking about patients’ sexual activity) isn’t really built into the system. I’m afraid some people fall off, and that’s where the government comes in.”

Kasten said she’d love to see programs created from Smith’s bill where smaller providers are offering PrEP and communities are more educated about HIV treatment and prevention. 

Like Kasten, Henry has high hopes for Smith’s bill.

“Again, our health system is totally broken,” Henry said. “There’s been a slight improvement in my opinion over my 38 years of taking care of people with HIV. The Ryan White program has helped fix some of the issues in the system, but it doesn’t really apply unfortunately to people at risk of HIV. It’s a big frustration, but federal legislation could fix that.”