The High Cost of Harvoni; Luck was on My Side

When Gilead first announced that they were going to charge $84,000 for a twelve week course of treatment of Harvoni in the USA, it caused quite an uproar. It was shown to have a 90+% cure rate and relatively low side effects so, of course, huge numbers of people with Hep C were going to want to be treated. But at that price, the highest price they charged for the drug anywhere in the world, most people felt they were gouging the sick (and their insurance companies). Gilead trotted out all the usual arguments about the cost of developing the drug, the need for the drug (or any drug) to be profitable in order for them to have a reason to manufacture it and the fact that many countries capped the price they were able to charge, but people in the Hep C community in the USA mostly felt that the price was unreasonably high. After all, if you only treat 100,000 of the conservatively estimated 5,000,000 people with Hep C in the USA at $84,000 per treatment, you rack up $8,400,000,000 in gross sales. That seems be a number that, along with sales in the rest of the world, is going to be giving Gilead a fairly massive profit.

Aside from the sheer cost of the drug to health care providers, the hammer really falls on the people actually infected with Hep C. If you don't have insurance, you are basically screwed. If you have one of the bronze level plans of the Affordable Care Act with a 40% effective co-payment you would have to pay $33,600 for treatment. A silver level plan would leave you with a $25,200 cost and even a gold level plan would still run you a bit over $16,000 out of pocket to be cured of Hep C. For those of us in the fast disappearing middle class in the USA, these are fairly staggering amounts. Sure there are various subsidies and cost breaks available, but given the way they are structured, if you make an amount of money that puts you in the middle class, you are often ineligible for help. I could get into a long rant here about how the Affordable Care Act is really only an affordable insurance act and the cost of any serious health care is just as out of reach under Obama's sellout to the insurance industry as it was in the days before the law was passed, but I will spare you that diatribe. Suffice it to say that the combination of Gilead's predatory pricing and Obamacare's mostly high patient payments means that a large number of Hep C sufferer's are shut out of access to the latest and best treatments available.

Earlier this year, Gilead announced that it will be cutting the cost of Harvoni by 46% sometime this year. This is because AbbVie has introduced their own interferon-free treatment Viekira Pak (which is priced similarly to Harvoni). While this competition is a good thing, the fact that the AbbVie product requires 4-6 pills a day and has more side effects than the single pill Harvoni might mean that it does not provide an effective competitor. If the competition is effective and does induce a lower cost for Harvoni, it means that treatment under a bronze plan would cost about $18,000; a silver would be $13,000 and a gold plan would drop to just over $8,000. While much better for patients, these are still large numbers. Numbers that would have put the treatment out of reach for someone like me.

I got lucky. I have health insurance through my employer and the roll-out for Obamacare has been complex enough that many employers have been granted waivers the past few years allowing them to keep their former plans in place until the regulations for employer-paid Obamacare plans have been worked out. My employer was granted that kind of waiver. I am insured by Kaiser Permanente in San Francisco and my plan is one that has a $30 co-pay for prescription drugs. I have been closely watching the Kaiser drug formulary (the list of which drugs Kaiser provides through their plan) to see when and if Harvoni was added. As soon as it was, I contacted my gastroenterologist to try to initiate treatment. Luckily for me, Kaiser has an extremely proactive view toward Hep C treatment. They believe that everyone who wants to receive treatment should have access. They seem to understand that, regardless of the high cost of the medication, it is cheaper to treat than to deny treatment and then have to pay the higher costs of late stage Hep C and/or cirrhosis treatment. Many insurers are not as forward thinking. Kaiser did initially prioritize the Harvoni treatment to the sickest patients but as that cohort moved through treatment, they rapidly expanded care to their other Hep C patients.

When I saw my gastro guy, I explained that I currently had a health plan that made treatment affordable, but that our current plan would be most likely transitioning to the less affordable Obamacare varieties by the end of the year and thus I would like to be treated as soon as possible. He told me stories of a number of his patients on the lesser insurance plans who indeed were currently shut out of treatment. This factor meant that while my liver is not in a particularly bad state, he agreed that the issue of affordability was one that qualified me for moving up the queue for treatment. He set up the necessary tests and within a month, I began treatment.

I feel extremely lucky that the new drugs came out when they did, that Kaiser moved relatively quickly to include them in their formulary and that they have a very proactive institutional policy toward treatment.  If any of these factors had taken another 6 months to work out, most likely I would be like many other Hep C sufferers on the outside of treatment looking in.

Liver Walks and Liver Disease PR

I've always wondered why folks with liver disease didn't organize events focused on Hepatitis, Liver Cancer and the other diseases that can devastate the liver. Was it the broad diversity of the afflicted group? Embarrassment about admitting to the disease? Shame about the possible, or definite, way the disease was acquired? Indifference due to the long time-span the disease takes to get really serious? A combination of all these? Who knows?

I arrived in San Francisco during the mid-1980s. It was ground zero for the raging AIDS epidemic. The AIDS afflicted community, mostly gay, began to mobilize early on to militate for research, awareness campaigns within the community, demand for drug research, medications and for companies to supply medications affordably. Perhaps because so many shared a common sexual orientation and a definite us vs. them mindset, the community was more predisposed to organize. Whatever the reasons, the AIDS community jumped in with both feet and as a result, AIDS awareness, research, drug availability and prevention education garner a great deal of attention throughout the country.

It looks like the liver disease community is starting to mobilize as well. The Fair Pricing Coalition  has been active in protesting the costs of treatment drugs, celebrities with liver disease have begun to come forward, and finally, The Liver Foundation is sponsoring a series of  Liver Life Walks in cities across the USA.

The Walk for a cause model is one of the oldest and most effective tools for raising awareness of a cause. It spreads far wider than the walkers themselves as family members, friends and sponsors of the walkers all become more aware and more likely to be talking about the theme of the Walk. It is also great therapy for the participants as they can band together to say that the status quo is no longer acceptable.

I urge anyone who has Hep C, knows someone who has it or, sadly, has lost someone who had Hep C, to join a walk, support a walker, or just talk about Hep C if the subject comes up. The more people know about it, the more likely they are to get tested, seek treatment and live better lives.

As my lovely wife put mentioned in the previous post, we formed team Heprat for the SF walk and will be walking the, extremely civilized 1.5 mile, course this Saturday, Sept. 15th. The week after there is one in Mpls/St. Paul, MN. and so on and so on. As the street hawker might say, Check It Out!

Co-Pay & Prescription Assistance Programs

As I am beginning to see the co-payments for my medications mount up, I know that many other people undergoing treatment are facing the same issue. Many of the folks I have met who have Hepatitis C, are putting off the decision to undergo treatment because of the cost of the medications. Others are waiting for the chance to screen for research trials of new drugs because the drug companies running the trials cover the cost of the medications and the monitoring care.

There are resources available to help with the cost of medications. I mentioned a few that are run by the drug companies themselves in this post. There are also a wide range of other programs run by both pharmaceutical companies and private foundations. A list of some of these programs follows. I hope it is useful.


Patient Access Nework Foundation
https://www.panfoundation.org/
1-866-316-7263
Assists patients who cannot access the treatments they need due to out-of-pocket health care costs including deductibles, copayments and coinsurance. Up to 4K yearly in drug/co-pay assistance. Patients can apply on line or call the phone number listed above.

Healthwell Foundation
www.healthwellfoundation.org
1-800-675-8416
Addresses the needs of individuals who cannot afford their insurance copayments, premiums, coinsurance or other out-of-pocket health care costs.

National Organization For Rare Disorders (NORD)
www.rarediseases.org
1-800-634-7207
Assists uninsured or under-insured individuals in securing life-saving or life-sustaining medications.

Partnership For Prescription Assistance (PPA)
www.pparx.org
1-888-477-2669
Offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. Includes assistance for the uninsured.

Patient Advocate Foundation’s Co-Pay Relief Program
www.copays.org
1-866-512-3861
Provides direct co-payment assistance for pharmaceutical products to insuraed patients (including Medicare Part D beneficiaries) who financially and medically qualify.

Chronic Disease Fund
www.cdfund.org
1-877-968-7233
Patient will have to call monthly to see if they have funds. Funds are based off individual donations.


Families USA
www.familiesusa.org
1-202-628-3030
Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.

Modest Needs Foundation
www.modestneeds.org
(415) 956-9395
Modest Needs is an award-winning public charity with a simple but critical mission: we work to stop the cycle of poverty BEFORE it starts for the low-income workers whom conventional philanthropy has forgotten.

Needy Meds
www.needymeds.org
1-978-281-6666
NeedyMeds is a non-profit with the mission of helping people who cannot afford medicine or healthcare costs. The information at NeedyMeds is available anonymously and free of charge.

Patient Services Inc. (PSI)
www.uneedpsi.org
1-800-366-7741
Assists patients in locating health insurance policies. Provides health insurance premium assistance (including COBRA) and co-payment assistance (including helping satisfy Medicare Part D true-out-of-pocket.

Advocacy Attorney through Crohn’s Foundation
Email: patient_advocate@sbcglobal.net
1-860-674-1370

Patient Advocate Foundation
www.patientadvocate.org
1-800-532-5274
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life threatening or debilitating diseases.


OTHER FINANCIAL ASSISTANCE PROGRAMS



Chrohn’s & Colitis Foundation of America – www.ccfa.org - 1-800-932-2423

American Cancer Society – www.cancer.org – 1-800-227-2345

Brain Tumor Society – BTS Cares – www.tbts.org – 1-800-770-8287

Cancer Care – www.cancercare.org – 1-800-813-4673

Leukemia and Lymphoma Society – www.LLS.org – 1-800-955-4572

Lymphoma Research Foundation – www.lymphoma.org – 1-800-500-9976

National Brain Tumor Foundation – www.braintumor.org – 1-800-934-2873

National Marrow Donor Program – www.marrow.org – 1-888-999-6743