Hope not enough to save communities of color from the HCV epidemic

In 2007, Hepatitis C (HCV) surpassed HIV in causing the more deaths in the United States. That same year, our first black president was in the making, and his chariots of hope were set loose. Unfortunately, many other people of color were languishing in our correctional facilities, with multiple co-occurring health conditions —king among them HCV. The fate of their health is yet a reminder of their disenfranchisement. For incarcerated people of color living with HCV any brush with the Department of Corrections is tantamount to a death sentence.

That is why it is utterly surprising that the state of Connecticut has invested very little in a public health infrastructure that guarantees equal HCV health outcomes for minorities. Among low income individuals in Hartford, Tolland and Middlesex, 80 percent of those co-infected with HIV/HCV are people of color.

In Tolland county, where the ratio of primary care doctors to patients is already high, there is only one known provider who accepts Medicaid or is Ryan White funded and offers comprehensive HIV/HCV care, including treatment. Otherwise, patients have to drive for miles — or as is the case, carpool at some exorbitant fare — to Windham, Manchester or Hartford.

This is not unique to Connecticut. Depending on whose data you are looking at, the prevalence of HCV in the country is estimated to be between 3.5 and 5 million people. The Centers for Disease Control (CDC) alarmingly reports that 50 percent of those infected with HCV don’t even know they have been exposed to this deadly virus. It is unacceptable that these figures fail to account for the full burden among people of color who are likely to face chronic housing instability, be institutionalized or serve in the military.

Those groups have been underrepresented in the current HCV epidemiological profile. If surveillance equates to prevention and those who are counted are cured, whole hosts of low-income communities of color across this great nation face a wipeout because they are not counted.

We know that over a 20-year period, anyone infected with HCV develops liver cirrhosis which can quickly accelerate into terminal liver disease or a sure need of a liver transplant. For minorities, the chances of either one of these conditions are exponentially greater given their risk of exposure to HCV infection and barriers to healthcare.

There are parts of our healthcare system that are working in Connecticut. Since the introduction of the new HCV medication called the Direct Acting Anti-viral (DAA) drugs in 2014, our Medicaid Preferred Drug List included 12 of these medications. It is also encouraging that for inmates with sentences longer than two years, there are policies to offer HCV treatment to all known chronic cases. Most recently, Gilead Sciences and the Health and Human Services department of Health Resources and Services Administration are piloting initiatives to expand the HCV care continuum in low income communities.

It is also important to acknowledge the foresight of some of our legislators on the matter. In 2014, Connecticut became the third state in the country to enact legislation that mandated birth cohort screening for HCV for baby boomers. With 1 in 30 persons born between 1945 and 1965 being infected with HCV, such a mandate to all primary care providers was responsive public health policy.

Sadly, our social and economic inequalities in Connecticut have grown too heavy for the chariots of hope. Patients still have to get through prior authorization before their treatment can be initiated. Other social conditions such as immigration status, criminal history and co-occurring morbidity prevent many people of color from accessing HCV treatment. The conundrum of our federally qualified health centers where most low-income people of color receive their care is compounded by the cost of each treatment, which can be as high as $85,000.

Before recent budget woes, the Department of Health was already underfunded to address the HCV epidemic. Our state HCV surveillance database is existent but not functional for the task. A separate study by one local health department to match their data against the state’s revealed that 6 percent of cases reported to the municipality were not picked up by the state. Six percent might seem small, but its relative significance for people of color is an astronomical catastrophe.

The urgency has been championed by those fighting to lower the prices of the DAAs, student activists lobbying for access to treatment for inmates, or by states like ours who expanded Medicaid. What remains is to choose the side of justice.