INDIANAPOLIS – The only doctor at the center of an HIV outbreak in rural Indiana cannot prescribe the latest treatments for patients also infected with the deadly Hepatitis C virus.
Dr. William Cooke, a family practitioner in Scott County, is treating dozens of people with HIV, the AIDS-causing virus that exploded in numbers among intravenous drug users earlier this year.
But state Medicaid rules forbid him from prescribing new treatments to those same patients with Hepatitis C, the blood-borne disease that causes inflammation in the liver and now claims more lives than HIV in the United States.
The rules put tight limits on treatments paid for with taxpayer dollars. The only doctors who can prescribe the expensive drugs are gastroenterologists and infectious disease specialists.
But neither exist in the poor rural communities of Scott County - nor in many other rural areas throughout where cases of Hepatitis C are on the rise.
“All that does is increase barriers to care,” said Cooke.
Citing public health experts, Cooke said most Hepatitis C treatments can be delivered in a family doctor’s office or clinic.
Instead, in Scott County, a gastroenterologist specialist from New Albany, 30 miles away, visits patients at the county’s only hospital, in Scottsburg, twice a month.
“Some of my patients can’t or won’t go,” said Cooke. “We had a hard enough time getting people tested for HIV. They don’t trust doctors to begin with, and they don’t trust strangers.”
Medicaid officials, whose health plan serves the poor, say the rules were written with the input of a state panel of medical experts and are meant to safeguard patients who are chronically ill and need the care of specialists.
Chris Johnson, chief of staff for the state Family and Social Services Administration, which oversees Medicaid, said specialists are needed to prescribe treatment since the healthcare program only covers patients with advanced stages of Hepatitis C who are at risk of complications, such as cirrhosis of the liver or cancer.
“We take a look at national treatment guidelines to develop a consensus on how to treat our Medicaid population,” he said.
Johnson noted the state program considers patients who face problems in accessing care. For example, Medicaid can cover the cost of a taxi ride to an appointment with a specialist in a neighboring county.
“I don’t believe it’s a burden,” he said of the current restrictions.
Indiana is one of at least 14 states with Medicaid programs that require Hepatitis C treatment to be overseen by a specialist, according to a study by infectious disease experts that was published in the Annals of Internal Medicine.
The study’s authors criticized limits on prescriptions as an unnecessary barrier to care and questioned whether they violate federal Medicaid rules. They noted that primary care doctors, like Cooke, can make prescribing decisions after consultation with a specialist in 15 states.
Dr. David Thomas, head of the Division of Infectious Diseases at John Hopkins Medicine in Baltimore, endorses that approach. He’s developed a telemedicine course, using technology like Skype, for primary care doctors in underserved areas where Hepatitis C rates are climbing.
“You’ve got a structural problem there,” Thomas said of Indiana’s prescribing limits. “That’s something that needs to change quickly.”
The Indiana Rural Health Association is concerned, too, especially as the number of Hepatitis C patients rises. State officials have identified about 11,500 cases in Indiana. More than 4,000 new cases of Hepatitis C were identified last year.
“The rule creates a burden for people who live in rural communities that are already facing problems with access to medical care,” said Don Kelso, the association’s president.
Cost is a major factor. While Hepatitis C is treatable, drugs are expensive. A 12-week regimen of the latest medicine can cost as much as $84,000.
But those drugs have higher cure rates, and involve less complications, than treatments used in the past. Federal Medicaid rules discourage restrictions on them. The healthcare program for the poor is administered by the states, 29 of which have expanded coverage under the Affordable Care Act.
Public health experts have also called on Medicaid programs, not just in Indiana but throughout the United States, to ease restrictions on Hepatitis C treatment.
So have the U.S. Centers for Disease Control and Prevention, which assigned public health experts to work with leaders in Scott County to curb an HIV outbreak linked to drug users who’ve shared contaminated needles. More than 80 percent of the 174 people with HIV linked to the Scott County outbreak also have Hepatitis C.
The CDC has funded a program in Arizona and Utah that trains primary care doctors to treat Hepatitis C patients in rural communities where there are no specialists.
Dr. Judith Feinberg, an infectious disease specialist at the University of Cincinnati who has worked closely with the CDC to treat Hepatitis C in rural communities, said restrictions boil down to budget concerns.
“All of these rules in Indiana and elsewhere about limiting who can prescribe is about making it harder for patients to get the medication and therefore limiting the cost of paying for the medication,” she said.
There are signals that Indiana may soon review its policies.
Public Health Commissioner Dr. Jerome Adams has questioned the disparity in healthcare access between rural and urban communities. He also has arranged for services, from medical care to counseling, for the HIV-ravaged community of Austin.
Adams declined to comment on the state’s Medicaid policies on Hepatitis C treatment. But Ken Severson, a health department spokesman, said in a statement that the state is “beginning a review of this policy, in light of high rates of Hepatitis C throughout the state and the infection’s link to the opioid epidemic.”
In Scott County, Dr. Cooke said he understands that the current limits were drawn before the HIV outbreak there, and he doesn’t believe they were aimed at restricting care.
“I think it’s a case of unintended consequences,” he said. “Whoever made that rule probably wanted to do the right thing. But it disenfranchises patients in rural communities - and we keep doing that over and over again when it comes to rural healthcare.”
Maureen Hayden covers the Indiana Statehouse for CNHI’s newspapers and websites. Reach her at firstname.lastname@example.org. Follow her on Twitter @MaureenHayden