Who Is Dealing with Hepatitis C? Results from the Help-4-Hep Hotline
Editor's Note: This guest post was provided by Help-4-Hep General Manger Dennis Simon.
Help-4-Hep is a non-profit, peer-counselor, nation-wide helpline that been helping people affected by hepatitis C since 2012. Anyone can call with questions about hepatitis C or to get referrals to a doctor or clinics that test, and treat, hepatitis C. Resources for financial assistance to help pay for treatment are also available.
Callers talk one-to-one with a real person, someone who's had hepatitis C (HCV). Callers are provided with information and resources for testing, treatment, financial assistance or, in many cases, simply someone to talk to who understands the challenges of coping with HCV. The phone call, support, and information are all provided free of charge.
The evolution of Help-4-hep
When the helpline was launched, there was not yet a cure for HCV. Understandably, many of the callers at that time were merely seeking basic public health information. The most frequent query at that time was related to transmission and personal risk of infection or someplace to get tested. Since the advent of direct-acting anti viral drugs that cure HCV, caller needs have transitioned to access-to-care including finding a doctor that will treat, and financial assistance (due to the high cost). This has resulted in an increase in the level of individual caller engagement.
Who is calling?
The Centers for Disease Control and Prevention (CDC) & USPSTF indicate that people born from 1945–1965 (Baby Boomers) are 5 times more likely to have hepatitis C; They account for 75% of people infected. The campaign to get this message out has been successful. Approximately 70% of callers to Help-4-Hep are baby boomers.
Approximately 50% of callers identify as female. Only 37% identify as male.
On behalf of...
With expected consistency (actually measured for 2016 thru 2019), 98% of the calls are on behalf of the caller or someone specific, like a spouse or other family member. The balance of the calls were from a variety of other sources including HCPs calling to validate who we are. And some were actually “secret shopper” calls from potential grant funding sources.
New versus return callers
The number of callers is (approximately) evenly split between new clients and return clients. Before a cure was available, most people called one time for specific information. Note that the count of Return Callers includes counselors calling clients who have opted for us to follow-up on their status and needs.
HCV status on first call
One of the helpline’s primary objectives is to assist callers to progress through the continuum-of-care. Callers usually tell the counselor their HCV status each time he/she calls. Caller status when they call the first time gives an indication of why they have reached out for assistance. Approximately 65% of first time callers have already been tested and know that they have hepatitis C. And because they know their status, they recognize the need to take action, i.e. seek treatment or confirmatory testing.
The actual HELP
Most of the callers are looking for a place to be tested, a place to be treated, or financial assistance to help pay for treatment. Over the past 3 years, there has been a slight decline people looking for a place to be tested. But there is a consistent need for help finding a doctors or a clinic that treats HCV AND for financial assistance.
During the past 2 years, approximately 65% of callers that chose to tell us, reported that they did have insurance. Of those, roughly 35% indicated that they have private insurance, between 45 and 49 percent have Medicare, and 20 to 25 percent are on Medicaid.
For those in Canada, call Help4Hep BC* at 1-855-411-7578. *Please note, Help4Hep BC may be able to provide limited support for people outside of British Columbia.
Do you experience long-term side effects from hep C treatment?