As uncertainty lingers over the future of American health care, there’s particular concern among a specific group of patients: those with hepatitis C.
“It’s a big issue right now,” said Vaughn Ripley, a Brunswick councilman and previous hepatitis C patient. “Depending on what happens here, because of how expensive the hep medications are, we may see an end to people getting cured and doing stuff to fight it.”
Ripley, 50, has had more than his fair share of dealings with the health care system. Diagnosed as a child with hemophilia — a rare genetic disorder that prevents normal blood clotting — Ripley was later infected with both HIV and hepatitis C from tainted blood transfusions.
He was cleared of hepatitis 13 years ago after enrolling in a beta program of pegylated interferon and ribavirin, two drugs that were once the gold standard for hepatitis C treatment. But the disease is still a concern for others in the hemophiliac community, many of whom also contracted hepatitis through contaminated blood, Ripley said.
Even more concerning for the general population is the overall rise in hepatitis C cases connected to intravenous drug abuse. From 2015 to 2016, the number of past or present cases of the disease in Frederick County rose from 171 to 234, according to data from the Frederick County Health Department.
Nationally, new hepatitis C cases have almost tripled between 2010 and 2015, according to a recent report from the Centers for Disease Control and Prevention. The highest rates were among people ages 20 to 29 who inject drugs. The agency also believes that cases are frequently underreported, given that hepatitis C is often asymptomatic and left undiagnosed for years.
“There are going to continue to be new cases of hep C among people who are addicted to heroin and are injecting,” said Connie Callahan, the former executive director of the now-shuttered Frederick County Hepatitis Clinic. “It’s not from blood transfusions anymore. It’s from sharing needles and a risky lifestyle.”
While Ripley’s treatment program was covered by private health insurance, both Callahan and Dr. Syed Haque, a former volunteer for the clinic, say that most hepatitis C patients rely on state Medicaid to fund their care. That fact is one of the greatest concerns for treatment advocates, given proposed cuts to Medicaid under the American Health Care Act of 2017.
According to a report from the Congressional Budget Office, there would be 14 million fewer Medicaid enrollees by 2026 if the AHCA was passed into law and federal funding for the program was capped in 2020.
Beyond that, Haque said, it could also become more difficult for hepatitis C patients to have their treatment approved and subsidized by state Medicaid. Drugs that clear the disease — including Harvoni, one of the most commonly used medications — are extremely expensive. The full treatment cost per patient is $92,000, according to Brittany Fowler, a spokeswoman for the Maryland Department of Health and Mental Hygiene.
Reduced funding levels coupled with the expense of treatment could lead the state to cover fewer hepatitis C patients, Haque added. Maryland Medicaid currently requires that patients have a fibrosis score of two to begin treatment, meaning that there is already minor damage to the liver due to the inflammation that characterizes hepatitis.
A fibrosis score of four, for reference, means that the patient has cirrhosis, or chronic liver disease.
Should funding levels for Medicaid decrease, it’s possible that the state will raise the fibrosis score that’s required for a patient to receive treatment. South Carolina demands a fibrosis score of three, Callahan said, and other states are beginning to follow suit.
“But you don’t want to wait until the person is visibly sick,” Callahan added. “It can take 10 to 20 years for patients to change to the next level, and the state of Maryland has already capped the score they need for treatment. That’s unfortunate, because people will get sicker down the road.”
Even for patients with private health insurance, coverage for hepatitis C treatment isn’t always assured. Callahan said she advocated for one woman whose plan denied treatment because of her low fibrosis score. Another woman was approved for only eight weeks of treatment, though the medical standard is 12.
Insurance companies also require rigorous testing before approving a treatment program, said Haque, who still treats some hepatitis patients as a private internal medicine physician.
Patients must receive a physical evaluation and a liver biopsy to test their fibrosis level, in addition to drug and alcohol tests to prove they’re not using substances that could exacerbate the condition.
After the testing, Haque said, he writes to the insurance company to certify that the patient will benefit from the treatment.
“And if they like you, they’ll say yes, and if they don’t like you, they’ll say, ‘Hey, do this, do this, do this,’” Haque said. “Another month, two months gone. So, you have to go through the process. It’s not easy, trust me.”
Another concern, especially for Ripley, is an amendment that was added to the ACHA before it passed through the U.S. House of Representatives on May 4. The change permits states to request a waiver that would allow insurers to set the price of plans based on the health of the buyer.
Though the future of the ACHA is still uncertain, the amendment could essentially undercut a section of the Affordable Care Act — the health care legislation passed by President Barack Obama — that prohibited discrimination against people with pre-existing health conditions.
“There’s a big uproar in the community,” Ripley said. “I mean, it’s huge. Our pre-existing conditions are something we were born with or something we got because of transfusions we got as kids. So, it’s unreal that this would even be a consideration.”
Even more worrisome to Callahan is the possibility that hepatitis C patients would lose insurance coverage entirely and never receive treatment for a disease that can lead to liver cancer or chronic liver failure. The timing is also frustrating given how drastically the treatment for hepatitis C has improved.
“There was a time when treatment was maybe 50 percent effective and took 48 weeks,” she said. “With the advent of Harvoni, it has changed that whole dynamic. You can be treated and have it be effective in 12 weeks. You don’t have the cost of testing, you don’t have to take downtime for side effects.”
Cutting benefits, she added, would also do nothing to slow new cases of the disease.
“You just end up with more patients who still have viral hep C,” Callahan said. “And it spreads through blood to blood contact. So, if those patients are not able to be treated and counseled on risk factors, that component of care is lost and they’re out there with a potentially spreadable disease.”