Patient advocates decry restitutions on medications
by Larry Buhl
There is agreement in the medical community that a revolution is underway for the treatment of hepatitis C. New antiviral drugs are available and more are in the pipeline that will further reduce the treatment timeline, reduce or eliminate the worst side effects of old-line meds, and provide a cure for most genotypes.
But there’s no agreement on how, or even whether, payers will cover these lifesaving new drugs for everyone infected with the hepatitis C virus (HCV). The fanfare over the drugs is accompanied by a raging debate about whether it’s ethical for private insurers to deny coverage for these meds, and whether Medicaid programs—which are often underfunded—even could cover every infected patient.
The medications are not cheap, at least not yet, with prices over $80,000 for some regimens. Prices could come down when more medications come online, and shorter regimens could mean a lower upfront cost.
Right now both private and public payers are doing economic triage, by severely restricting which patients they’ll cover for new generation hep C meds. The policy in many states and in many insurance companies is to cover only the sickest patients and deny coverage for those with active or recent substance use issues, whether or not the substance abuse led directly to contracting hepatitis C. Medicaid in many states now limits treatment to people with severe liver damage—advanced fibrosis (Metavir stage F3) or cirrhosis (F4)—and require patients to have up to six months of pre-treatment sobriety.
Many payers have begun an additional cost control effort: prohibiting qualified HIV care providers from offering hepatitis C treatment by limiting such care to providers trained as gastroenterologists, hepatologists, or infectious diseases specialists.
These measures have hepatitis patient advocates crying foul.
In September, a coalition of hepatitis C advocacy organizations and medical providers took on these restrictions by issuing an open letter to the Secretary of Health and Human Services, Sylvia Mathews Burwell. The letter calls for an end to restrictions on access to hepatitis C treatment by private and public insurers, and requests an end to the restrictions on which medical specialists may treat people with hepatitis C.
NVHR, Project Inform, and other concerned groups that signed on to the HHS letter are not demanding price reductions for the meds. Rather they are asking for discussions by calling on private and public payers, experts in HCV, drug makers and government officials to come together with long- and short-term solutions for covering more infected patients.
Ryan Clary, executive director of the National Viral Hepatitis Roundtable (NVHR), helped draft the letter to the Secretary. He told A&U that the restrictions on which patients get the meds and which don’t, are “discriminatory, and antithetical to the goals of the Affordable Care Act.”
“The stated reason by the public and private payers for not covering drug users is the possibility that they may use again and may need treatment again. But [the policies] not only hurt those with hepatitis C, they don’t even make sense financially, in the long run.”
Clary says insurers see treating patients with HCV as a one-time high cost, and fear they won’t realize the benefits if the patient is cured and then switches insurers. “And these companies have conducted a sustained PR campaign saying the prices are so high that if we cover the meds it will bankrupt us. But these companies aren’t looking at the cost of caring for patients who get liver cancer if the virus isn’t treated early.”
The new practice of prohibiting doctors with an expertise in HIV from treating coinfected patients affects twenty-five percent of the more than 1 million Americans living with HIV and HCV. Many of them receive medical care from HIV specialists who are adept at monitoring antiviral therapy, monitoring viral load, dealing with side effects, drug interactions, and adherence.
Clary and other patient advocates say doctors who are already treating patients with HIV and HCV are best qualified to manage potential drug toxicities and side effects from the medications, and that the restrictive policies could lead to treatment disruptions as well as serious, and unnecessary, health outcomes for patients.
“The practice of restricting who gets the meds may appear to make sense financially, at least in the short term, for payers,” Clary says. “But the restrictions on who can treat those who are co-infected with HIV, there’s no clear rationale for that at all.”
NVHR says HHS has responded to the letter and the Interim Active Assistant Secretary has expressed interest in setting up a meeting. Clary is hopeful that by this time next year there will be expanded access to the newest treatments for more Americans with HCV.
Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com.