There are HCV treatment choices to make, but often few options
by Larry Buhl
If you’ve tested positive for the hepatitis C virus (HCV), there are several decisions to make. First is determining whether you need treatment immediately or could afford to wait. Next, if you choose treatment, is it important to take advantage of the newer, faster, and more effective direct-acting antivirals (DAAs), or rely on the older, more difficult regimen of pegylated interferon and ribavirin?
You will also need to decide who is best to administer treatment: your primary care physician, an infectious disease (ID) specialist, a gastroenterologist, or hepatologist. A gastroenterologist specializes in the digestive system, which includes the liver. Hepatology, a sub-specialty of gastroenterology, focuses on the liver, gallbladder, and pancreas. A gastroenterologist should know about hepatology and is likely to have experience in treating hep C. Both hepatologists and gastroenterologists can test the amount of liver damage and your viral genotype and viral load and help you decide whether treatment right now is the best course.
Being coinfected with HIV adds another set of questions. You may already be seeing an ID physician or HIV specialist. But that doctor might not have experience in treating hep C.
Kelsey Louie, CEO of HIV/AIDS nonprofit Gay Men’s Health Crisis (GMHC) tells A&U that, whether a patient is HIV/HCV coinfected or HCV monoinfected, any doctor that’s easiest to continue seeing—assuming they have the appropriate experience—is probably best.
“Most infectious disease doctors or HIV specialists should be able to also treat HCV,” Louie says. He adds that your comfort level with that physician is also important.
“If someone is HIV-positive they should be hooked up to a social service organization, preferably with a policy arm, like GMHC, an organization that will assist in the continuum of care.”
GMHC, for its part, recently began offering rapid HCV testing, and has been using the HIV model to link patients to practitioners with experience in treating both viruses.
But for many HCV-infected patients, restrictions on what will be covered mean that the decision on where to go for treatment might be moot.
I’ve reported on how cost considerations have led many insurers to severely restrict reimbursement for newer, more expensive HCV meds. Many state Medicaid programs pay for hepatitis triage: covering DAA treatment for patients with advanced fibrosis or life-threatening cirrhosis.
But since the advent of DAAs, many payers have also begun restricting which doctors will be reimbursed for treating hep C. Some state Medicaid programs cover only gastroenterologists, hepatologists and ID physicians for treating HCV. Some programs—Pennsylvania’s is one—exclude non-ID specialist HIV providers from prescribing hep C drugs.
In 2014 the chairpersons of Infectious Disease Society of America and the HIV Medicine Association wrote to letter to the Centers for Medicare and Medicaid Services, stating that not all hepatologists have experience managing HCV, and that many hepatologists have “little experience managing the complex care of HCV and HIV coinfected patients, since a majority are cared for by ID or HIV specialists.”
Limiting the type of doctor who can treat hep C creates a conundrum for many patients. There are not enough specialists, especially in rural areas, and many subspecialists like gastroenterologists don’t take Medicaid patients.
“Treating hepatitis C with newer regimens isn’t as big of a moneymaker as it was when treatment was complicated and lasted eleven months,” Nancy Steinfurth, executive director of the Liver Health Connection in Denver tells A&U.
Further restricting access in Colorado is the availability of specialists, Steinfurth adds. “Literally there are only twenty hepatologists in Colorado and none in the rural eastern third of the state.
“As of October 1, Colorado’s Medicaid program reversed the nationwide trend and loosened its restrictions on payment. Now general practitioners in that state may treat HCV when “in consultation” with an ID specialist. GPs are still determining what “in consultation” means, Steinfurth says, but she points to one new educational platform that may serve that purpose.
The University of New Mexico’s Project ECHO (http://echo.unm.edu) is a Web-based learning tool that lets general practitioners and internists log in through the web to consult with experts on issues like HCV testing, genotype, viral load, and medication administration. It’s so new that as we go to press no doctors had signed up for it yet. But Steinfurth says such a program could be a critical link to care in a rural state like Colorado.
For now, there are limited choices for many hep C patients nationwide. Both Louie and Steinfurth point out the irony that, as HCV treatment has become shorter and easier, restrictions on who can treat it have become tighter.
Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles.