Published on May 17, 2018
A lot of people are asking me what I thought of what the President said last week that he would do to tackle prescription drug prices, or more precisely what he did not do, since many believe he let big pharma off the hook. I prefer to focus on what we as patients can do to help ourselves, because I’m not sure what the government can do that would be helpful regarding the list price of cancer meds.
Price controls? They don’t work and could stifle the kind of extraordinary advances that prompted me to tweet the other night:
“Twitter: @andrewschorr. CAR-T for Multiple Myeloma. Just heard my Internet friend, patient advocate Cherie Rineker, a woman who was so so sick, is now in complete remission after CAR-T. Yay!!”
I’m not defending pharmaceutical pricing, as we’ll see public pressure can and has had an effect on some pricing decisions. But as the Cost of Healthcare News reports, we don’t want government interference “that would further block patient access to medicines and deter investment in developing new medicines that save lives.”
That’s why we like the administration’s attack on middlemen, insurers and co-pays. Capping the co-pays and blocking rebates that aren’t passed along to patients will place real money in our pockets. In 2004, the company Caterpillar cut out the middlemen, created their own pharmacy agreements and voila! Within five years, their prescription costs were down nearly 7 percent, and the annual cost for members in the company’s health plan was down nearly 14 percent. (Read more here.)
What about just allowing Medicare to negotiate with drug companies about their pricing? Seems like a reasonable course of action, but it might not do as much as one would hope. It remains to be seen and would require Congressional legislation. As things stand now overall drug prices increased just 1.9 percent last year, below the rate of inflation and yet patients' out-of-pocket costs continue to skyrocket largely because of cost shifting by insurance companies…putting drugs in higher tiers with bigger co-pays.
What about the FDA plan to speed approvals of generic drugs? Again, yes in theory, but only if generics live up to their promise. Generics don’t advance medicine; their role is to make existing therapeutics cheaper after they have been gifted to us when the patent runs out. But now we see that more than 3,500 generic drugs doubled in price between 2008 and 2015, and as we’ve reported here many are under Department of Justice investigation for collusion.
Taking Matters Into Our Own Hands
So what can we do? Recently a lot of people complained about a price change for ibrutunib (Imbruvica) for chronic lymphocytic leukemia, a condition I have myself. According to STAT news, “After a group of doctors raised a public fuss last month about a complicated change in pricing and dosing for a cancer medication, the manufacturers late last week suddenly scrapped plans to greatly increase the cost, according to a statement issued by one of the companies. The about-face is an unusual instance in which a drug maker—in this case, two drug makers—rolled back plans to boost pricing in the face of notable criticism.” So some of my CLL friends squawked and the outcry worked. Bravo!
Also—check your insurance policy and look for one with manageable co-pays. We know that patients with manageable co-pays do not have a cost issue, and according to the IQVIA Institute for Human Data Science, most prescriptions ARE reimbursed at affordable rates. “Only 2.3% of all prescriptions cost the patient more than $50.”
Federal law puts a cap on how much patients with private insurance must pay in out-of-pocket costs but patients don’t know their insurance rights. If you think your insurance plan is mistreating you, write to our Dear Stacey column for information about insurance abuse and how to stop it.
Let’s keep up the public political pressure.
Laws requiring equal reimbursement for oral anti-cancer meds compared to infused ones have passed in 43 states with active campaigns in four more states. At least six states have laws capping the amount patients must pay out of our own pockets. Let’s fight for legislation in more states.
Industry Is Beginning to Respond
Again, as we have reported, Spark Therapeutics Inc. announced its revolutionary gene-based treatment Luxturna will not be priced as high as investors expected, and it will come with a creative pricing/payment package, perhaps presenting similar options for targeted cancer medications. We are not defending the pricing, but we are encouraged by the creative strategy that the company CEO says will “strike a balance between the access concerns of patients, families and providers … and the need for us to create a business model that will support the sustainability of the company." This is where we are headed, paying for value. Companies that develop breakthroughs get rewarded. Ones that don’t are not.
Even the insurance industry is stepping in: the Washington Post reported that UnitedHealthcare will pass rebates for prescription drugs directly to the 7 million people enrolled in its fully insured employer plans. According to the Post, “These rebates—which have grown dramatically in recent years—are typically (and controversially) pocketed by employers or insurers instead of used to lower out-of-pocket costs for enrollees. Because the size of the rebates aren’t made public, customers often don’t know they’re paying far more for drugs than the price negotiated by their plan.” The decision will only affect a small portion of the patients covered by UnitedHealthcare, but it is the start of a trend in the right direction.
We Are Continuing the Fight
We will be speaking on a panel at the prestigious global cancer meeting ASCO, where we will discuss financial pressures on patients. Some of you have already sent us your stories asking for help, and we will present them there.
Conversely, if you have insurance with a manageable co-pay, or if you live in one of the states that caps the co-pays, let us know, so we can share your story of what happens when the healthcare system works in our best interest supporting medical innovation at reasonable costs to us, the consumers.
I welcome your thoughts at firstname.lastname@example.org.
Co-Founder, Patient Power LLC
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Your site is AWESOME! Thank you all so much for this incredible resource to families who are in crisis/affected by cancer.