Over the last few months, I have been working on a Building Trust Initiative with the American Board of Internal Medicine Foundation. In conjunction with ABIMF, this month I will be addressing the ways that trust, or lack thereof, can impact health and healthcare. Please take a moment to view a video I recorded with them on this subject.
Discussing the relationship between patients and the manufacturers of the treatments we need to survive is another delicate topic, and this post is not meant as an attack. But the conversation needs to happen and the best way forward is always through, starting with putting cards on the table. This post is a limited one due to space and attention spans, but if anyone wants to respond to this, or any of the posts in this series, I am listening.
Drug and Device Makers
Well, it appears I’ve saved the best for last. And if not the best, perhaps the most conflicted. While trust in myself is complicated but knowable, trust in providers is fairly straightforward, and the tension between patients and insurance is specific to the constraints of the industry.
Our feelings about the drug and device companies are more convoluted. To paraphrase a silly movie, it’s the duality of man, that Jungian thing, exemplified by Matthew Modine in Full Metal Jacket with a peace sign on one side of his helmet and “Born to Die” on the other.
For patients, the technology of the drugs and devices we depend on is a scientific marvel, and we are grateful for the chance to use them to improve and extend our lives. On the other hand, we feel like the companies that develop and sell these miracles of technology dangle them in front of us then yank them away through price hikes based on nothing more than what the insurance companies and the Federal government (through Medicaid/Medicare) will pay for it. They treat drugs and devices as if the markets are driven by the normal push and pull of supply and demand. As with health insurance, that just isn’t true. With the drug patent process locking out the development of generic versions, pricing often puts life-saving drugs out of reach for patients who can’t afford expensive insurance and can’t go to another company for a less expensive option. The device makers do not allow us to understand how the devices may or may not work, and we are unable to make the most educated decision, or to brace ourselves for what to expect if there is no other choice other than their device. To us, it feels like these companies are playing fast and loose with our lives, putting shareholders’ interests over patients’.
The best example I have of the unreasonable cost of a life-saving drug is a personal one. In 1923, the inventors of insulin sold their patent to the University of Toronto for $1 ($16 today), and refused to put their names on the patent because they felt it would be unethical to profit from a life-saving medication and they wanted everyone to have access to it. This was in an era rife with “miracle cure” profiteers. When I was diagnosed with Type 1 diabetes in 1991, I could get a vial for $11. In 1999, when the latest technological advance in short-acting insulin occurred, back when insulin was considered a “resource for the public good instead of a billion dollar market”, you could get a vial for $21. That exact same vial today costs $332. Why?
Even the drug companies’ patient advocates are primarily there to convince other patients to take their drugs, which automatically makes their motives suspect.
There is a lot of discussion about how high drug prices can be justified becauseit all gets rolled back into research in development. And some of it does, but a lot of it doesn’t. There is a big chunk of revenues dedicated to convincing doctors to prescribe a particular drug, and sometimes kickbacks, which may negate or obscure the dangers associated with the drug. And since 1997, when drug companies were first allowed to participate in direct-to-consumer advertising, the budget for these efforts has climbed to $6 billion/year. Often, the ads we all see on TV are for the most expensive drugs, which give only marginal or no benefit at all over less expensive options.
I haven’t said a lot about device makers yet. As with drug development, there are hundreds of devices like pacemakers that save lives every day, and patients are grateful. But there are also fewer devices than drugs, and the technology of a device is often easier to see than the technology behind a drug, so they are less often a target of scrutiny. But the medical device industry has its own issues, primarily with effectiveness and benefit of the devices. I use two cutting-edge devices, a continuous glucose monitor and insulin pump that were supposed to work together to create the very first closed loop external pancreas. It didn’t work for me. I have to use these devices on manual. I am sure my previous insurance company would be thrilled that they shelled out $7500 for something that doesn’t do what it’s supposed to do. I got it because I was in a bad place with my diabetes, and I hoped the technology would help me stabilize. It didn’t, and now I am locked into this device until the warranty expires in two-and-a-half years. When I first realized, and before I had accepted, the limitations of my cutting edge tech, I called the maker over and over, begging someone to help me understand its algorithm and how to make it work, but the company 1) didn’t train their reps in the technology, and 2) weren’t about to expose their trade secrets to help me.
It’s much harder to address the device issues because the patient doesn’t know the device is an issue until after they have it inserted, and there is no option to stop that treatment and go to something less invasive. Granted it was a short search, about 10 minutes poking around Google, but I couldn’t even find articles that talked about the most effective medical devices. Most innovative, yes. Top future trends, yes. But not which existing technologies worked the best to treat their associated conditions. And we are not a society that goes for noninvasive treatment first.
As with insurance companies, it comes down to the fact that drug and device companies are in business to make money. I am not against private companies making money, but when it comes at the expense of patients’ lives, surely they understand why we patients are wary of them and their motives.
As someone who takes expensive essential medications, was denied another expensive medication, and who wears would-be Class III medical devices, I would love to sit down at a table with drug and device makers to address some of these issues. As of yet, I have come across very few who seem like they are interested in anything but paying lip service. They don’t have to – the bottom line is safe and sound, and patients are once again left with a complicated, conflicted necessary burden.