You would think that accessing hepatitis C treatment would be as simple as the following scenario:
PATIENT: Hey doc, I want to take hepatitis C medications and be cured of the virus once and for all.
PROVIDER: I want you to be cured, too. Here’s your prescription.
PHARMACIST: Here’s your bottle of pills. Let me know if you have any questions and good luck!
Unfortunately, it is not that easy, and there are often multiple steps you, your medical provider, and even your pharmacist might have to go through in order to get your hepatitis C treatment. Just about every insurance plan has restrictions and it can be hard to figure out what they are. Sometimes these restrictions are clearly listed, but other times you won’t know until you try to get the treatment and you get denied. This is a frustrating situation for patients, providers, and advocates alike; hepatitis C is a progressive disease that causes much suffering, and all of this suffering is avoidable with a cure. Everyone with hepatitis C deserves a cure, but barriers can make it challenging.
Restrictions are lifting slowly. Pharmaceutical and insurance companies are striking deals for discounts on medications in return for better access. Patients, advocates, and medical providers are working every day to improve access to hepatitis C medications. In the meantime, there are things you can do to improve your chances for getting your treatment approved. There’s no one-size-fits-all solution for everyone, and this list is not exhaustive, but the following tips may provide some help for you in accessing HCV medications:
If you are denied treatment, don’t give up. Talk with your medical provider about appealing the denial and try again with updates about your medical condition. It’s also worth trying again as insurance plans might change their rules and lift restrictions.
Get a specialist.
Even if your primary care provider is able to manage your care and treatments, some insurance plans will only accept a prescription from a specialist, such as a hepatologist or gastroenterologist. If you don’t have a specialist, talk with your medical provider about getting referred to one and having her/him write your prescription and oversee your care.
Check to see if a different drug is covered.
Some insurance plans strike deals with pharmaceutical companies and are able to purchase HCV medications at a discount. These drugs become preferred and may be more likely to get approved. Check to see if the medication your medical provider prescribed for you is preferred by your insurance.
Check with the pharmaceutical company’s patient assistance program (PAP).
Every pharmaceutical company that produces hepatitis C medications has patient assistance programs and co-pay assistance programs. Many have restrictions for insured or underinsured people, but some do not. Even in those that do have restrictions, they have staff who may be able to help you navigate the system.
Refer back to the AASLD/IDSA HCV Treatment Guidance.
As you and your provider appeal a denial, cite and quote the AASLD/IDSA HCV Treatment Guidance recommendations found at hcvguidelines.org. These recommendations call for all people with hepatitis C to be treated regardless of disease stage or substance use history. Citing these expert recommendations can help support your argument for your right to treatment.
Track and talk about your symptoms at every provider visit.
If you and your provider can demonstrate how HCV impacts your quality of life, your insurance company may approve you. HCV can cause any number of symptoms—some objective, and others, like fatigue or chronic pain, are more subjective. Keep a health journal and track your symptoms and their impact on your quality of life. Talk to your provider about them at every visit and make them a part of your medical record to reference in your appeal.
Explore clinical trials as an option.
Clinical trials can be an option for treatment. There are many next-generation HCV treatment options in the pipeline from a number of companies. Clinical trials have the benefit of covering the treatment, as well as the labs and requisite provider visits. Some even pay you for your time and effort. Go to clinicaltrials.gov.
Talk to other HCV patients who’ve gone through this and received treatment.
Go to support groups, check out patient listservs, join a social media group (Facebook, Reddit, etc.) and ask people what they did to get treatment. Some of the things may not be applicable to you, but you never know; one person’s strategy may be a good fit for you. And even if not, you’ll get support and empathy from people to help you get through this stressful time.
Finally: Don’t give up. Even if it looks bleak and there is no way you will get treatment—and it may very well be bleak—don’t stop trying, and lean on your support network to help out. There are people working every day to lift restrictions and improve access to hepatitis C care. Call HELP-4-HEP at (877) 435-7443 to talk about your options and get support while waiting for the cure that you deserve.