Project Inform disappointed with direction of California hepatitis C testing bill

post_hcv_lgDuring this current legislative season, Project Inform sponsored California Senate Bill (SB) 1303, authored by Senator Norma Torres — a bill that would require healthcare practitioners in all primary care settings, except hospitals and emergency rooms, to make a one-time offer of a hepatitis C test to patients born between 1945 through 1965 (“Baby Boomers”) and other patients with identified risk factors for hepatitis C. The bill was modeled after legislation passed in New York State, based on hepatitis C testing recommendations by the Centers for Disease Control & Prevention (CDC) and the United States Preventive Services Task Force. Given that an estimated 500,000 Californians are living with the hepatitis C virus and at least half of them do not know it, passage of this bill would have helped to ensure that the number of individuals living with the virus and aware of their status significantly increased.

Two concerns arose about SB 1303 from legislators on the Senate Health Committee.

First, some senators took issue with a legislative mandate on doctors, feeling that medical practice should be managed solely by healthcare practitioners, who are best able to assess patient needs. Indeed, the California Medical Association, the only organization that opposed the bill, had this concern. Given the large percentage of Californians living with hepatitis C who do not know their status, however, it is clear that healthcare practitioners are not assessing which patients need hepatitis C testing. Last year, an HIV testing bill was signed into law, requiring the offer of HIV testing to individuals having blood drawn in the more limited setting of primary care clinics, because HIV is a significant public health concern and many providers are not testing their patients for this virus. Similarly, hepatitis C is a chronic illness and a significant public health concern.

Since 2007, hepatitis C has eclipsed HIV as a major cause of mortality in Americans. The CDC reports that hepatitis C accounts for more than 50% of new cases of chronic liver disease. More concerning, the CDC predicts that deaths due to hepatitis C will double or triple in the next 15 to 20 years. Given that it is the most common blood-borne infectious disease in the United States, a mandated one-time offer of hepatitis C testing to Baby Boomers and other patients with identified risk factors for hepatitis C mirrors national guidelines would be an important step toward ensuring Californians to know their status, take appropriate steps to live healthful lives with the infection (e.g., eliminating alcohol use, getting vaccinated again hepatitis A and B), and prevent onward transmission of the virus.

Second, Health Committee members had read and heard much in the press, on radio, and on television about the price of Gilead’s new hepatitis C treatment medication, Sovaldi, the so-called “$1000 pill,” and felt that passage of SB 1303 would cause an unmanageable tidal wave of patients needing this expensive treatment. The bill did not mandate treatment, but the simple notion that testing people would lead to increased treatment costs created very significant concerns among Senators about cost containment and affordability. The day before the Senate Health Committee hearing on SB 1303, Committee Chair Ed Hernandez requested a number of amendments to the bill related to containing the price of Sovaldi. Given that we had sponsored a testing bill and not a treatment bill, and that the amendments related to drug pricing across several payer systems and had not been studied for their implications, Senator Torres, along with Project Inform, could not accept the amendments.

Despite the Senators’ concerns, particularly the second concern regarding the price of treatment, SB 1303 was heard by the Senate Health Committee on April 30, but not voted on pending further discussion of amendments. Given that the bill was heard at the last meeting of the health committee for the year, SB 1303 effectively died in committee.

Project Inform is deeply disappointed that the cost of Sovaldi created such a significant barrier to moving the hepatitis C testing bill forward. As a founding member of the Fair Pricing Coalition, we have been part of Coalition efforts to encourage Gilead to address the pricing of Sovaldi. Unfortunately, the Fair Pricing Coalition’s requests to Gilead have gone nowhere to date.

We are evaluating what happened with the bill and how to proceed. Project Inform is committed to ensuring that people living with hepatitis C know their status and have access to appropriate health care and treatment. We are considering whether sponsoring a new hepatitis C testing bill in 2015 makes strategic sense or if there are additional avenues to achieve the same goal, including a budget request to support statewide provider education about the importance of hepatitis C testing.

Clearly, the cost of hepatitis C medications is a critical issue and, currently, a barrier to ensuring that people who need hepatitis C testing and medical care and treatment are receiving it. In order to effectively increase the percentage of people who know their status and can access appropriate care and treatment, we must address pharmaceutical cost-containment issues thoughtfully and strategically. Over the coming months we will be doing just that and we will work with other advocates to affect positive change in pharmaceutical pricing overall, not just for one hepatitis C medication or class of drugs. At the end of the day, however, we will insist, as we did before the Senate Health Committee, that people have a need and right to know their hepatitis C status, and have access to effective care and treatment, regardless of the cost of treatment medications.