When we think about educating and supporting patients on their health journey, our minds jump to doctors answering questions, pamphlets, or Google telling them something confusing and wrong. One place patients don’t typically go to for information are the pharma companies providing the drugs they are taking. But why? And why then does pharma spend billions of dollars a year on patient support and education?
Why do pharma companies want to educate patients?
As much as the CEO of Pfizer will tell you that everything they do is to help the patient, like any business they are motivated by profits. As such, every pharma company has 2 aims with a new drug they release:
a) Enrolment - getting as many people as possible to start taking the drug.
b) Adherence - to make sure people continue to take the drug and refill their prescriptions.
To illustrate the point, let’s take a drug like Humira, developed by AbbVie. Humira costs around $85,000 a year to take and it treats autoimmune conditions like Rheumatoid Arthritis. Like many autoimmune conditions, RA is incurable. This means that the patient is likely to be heavily reliant on medications to manage their condition for the rest of their life. This represents a huge financial upside to the pharmaceutical company. A patient taking Humira might be taking the drug for years after it is initially prescribed which means 1 patient can represent hundreds of thousands of dollars.
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It should now be clear why pharma companies spend a lot of money trying to enrol patients into their drugs and treatment plans - one patient is the same value as an enterprise software contract.
But that’s not all. A review of Annals of Internal Medicine said that “Studies have consistently shown that 20 per cent to 30 per cent of medication prescriptions are never filled” and “50% of medications are not taken as prescribed” Now this undoubtedly costs lives but to bring it back to why pharma companies care, it costs them dollars because individuals are both not completing their enrolment or adhering to the treatment plan.
AbbVie will only get paid when a prescription is filled, which means when patients don’t take their drugs as prescribed, it costs them many dollars - according to this Fierce article, it cost the entire industry $600b + in missed sales.
So what does this have to do with patient education and support? Well, 2 things. The hypothesis is that if patients are more aware of the available treatment ie AbbiVie’s Humira, then they are more likely to speak to their doctor about it as a potential treatment option (higher enrolment). Number 2 is that if patients understand the benefits of the drug, how to take it effectively and why/how they should engage in their condition overall then adherence will be higher.
It is worth mentioning here that is almost certainly the case that most people working for pharma companies are good, well-intentioned individuals. They feel they have the ability to save and/or improve millions of lives and in many cases, they succeed at this. But as Charlie Munger famously said, “Show me the incentives and I will show you the outcome”.
It is pretty obvious why pharma companies want to educate and support patients overall but how do they go about doing it at the moment?
Pharma’s version of patient education and its problems
So patient education for pharma companies sits as part of a broader strategy internally to support patients with their care. The main vehicle through which pharma helps patients are patient support programs or PSPs.
PSPs are care programs set up by the pharma company to better engage patients in their treatment. Patients support programs essentially consist of three aspects as Iqvia lays out - a) Adherence support b) Financial support c) Clinical support. This support is frequently dealt with through service hubs. These are souped-up call centres that can act as the main point of contact for the patient. Service hubs help patients with staying on top of their treatment program which includes drug and condition education. In addition, they provide support with the cost of the treatments and clinical aid. Bundled in with these services are all forms of education from helping patients understand their reimbursement to their conditions, to how to take their drugs.
In many cases, patient support programs offer great care and help. Like seriously, this is something pharma does that can really help patients. According to Inqvia, 61% show improved clinical outcomes.
But if you read all that and thought, well they aren’t going to get used by patients, you would be right. PSPs are the most poorly utilised part of an entire pharma company's operations. According to a Fierce article, pharma spent $5 billion on PSPs last year to have only 3% of all patients on their treatments utilise the programs. But why?
Asking the hard questions
Patients aren’t missing prescription refills because of a lack of clinical support. As I just explained, both payers and pharma companies spend billions of dollars on care coordination teams, clinical assistance and hub services.
There is an inherent distrust of the system. Pharma companies have fucked up too many times and provide a shitty service in too many other places for patients to trust them. We evolved to psychologically over-weigh negative experiences vs positive ones. And when it comes to your health, pharmaceutical companies are at the heart of a lot of these negative experiences. Here are a couple of examples to show you what I mean:
In 1900, Bayer announced the launch of a new drug which was set to be a stronger line of painkillers. The drug was called Heroin. Bayer positioned the drug to treat everything from colds to coughs, to extreme headaches. They also said it would be ok for children. The company made the most of the lack of regulation and a drug that they knew millions of people would use.
After regulation and smart political thinking reigned in a lot of this behaviour, the concoction of capitalism and pharmaceuticals would rear its ugly head once again, almost 100 years later. This is example is one which almost everyone in modern-day healthcare will be aware of: The Sackler brothers. The Sackler family spent the best part of a decade advertising Valium, menopause treatments and most famously an opioid-based painkiller called Oxycontin. They positioned Oxycotin as a less addictive and safer opioid as a treatment for pains, whilst being perfectly aware that it was actually highly addictive. Many people argue that the opioid epidemic today is a direct result of Sackler’s and Purdue Pharma’s behaviour.
With all that being said, the interesting part is the extent of the distrust. In many cases, the drug you take is saving your life more than the actions of your doctor or nurse. The innovation that pharma has brought to the world is mindbogglingly beneficial and it will likely save someone you know’s life. Whether you take a basic antibiotic, have had chemotherapy or maybe take Humira; these drugs have been developed as a result of innovation pioneered by some combination of pharmaceutical companies, academia and government. However, the fact they provide these life-saving treatments doesn’t mean we trust them any more.
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As patients, we want to keep our data as far from a pharma company as we can. Humans have an amazing nose for misaligned incentives and actually, it is patently obvious to a lot of us why pharma provides the services they do - they want you to take their drug. A drug that likely costs you and your insurer a lot of money, in some cases an amount of money that you can’t afford.
In Marc Randolph's book (Cofounder of Netflix) “That Will Never Happen”, he describes Blockbuster as being in the business of managed dissatisfaction. You would go into the store with a pretty clear idea of what movie you wanted and more often than not, they didn’t have it. This meant you had to find a replacement which was never quite as good as the movie you had in mind - managed dissatisfaction. The same is true of pharma but in a different way. They have a monopoly power over you which means as they are likely the sole producer of a life-changing drug like Humira. You don’t have a choice but to take and hope your insurance company covers most of the cost. You know they are taking advantage of your pain and desperation to make a lot of money. Arguably, the level of dissatisfaction here is much higher as you are knowingly partaking in a grift, with your arms tied behind your back.
The result of all this is that when they offer you free services or support that might actually help, you are incredibly sceptical because their track record doesn't look great.
What next?
Should you as a patient use PSPs more than you do? Probably. Will you? Probably not. The financial arbitrage of patients makes anything they do in goodwill immediately questionable.
In most cases, I don’t think the problem is with the PSP itself but with the organizations providing them. They could offer 5* Ritz-Carlton level care and services and I still think no one would use them.
So what does the future look like? Well, potentially it looks like advice from an agnostic party; AI. As I have concluded in this blog, the reason patients don’t use PSPs is that they don’t believe pharma has their best interest at heart. But an AI? Chat interfaces like ChatGPT could be the new medium through which we learn and conduct our own research. Nikhil Krishnan explains it nicely in this post:
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It is too early to say whether this is definitively the case. AI might become a political and medical hot potato, at which point, it will suffer from the same issues we outlined above. But for now, the rise of AI and past pharmaceutical malpractice will cause patient support programs to be dead on arrival.
Sources
https://pubmed.ncbi.nlm.nih.gov/22964778/
https://www.nejm.org/doi/pdf/10.1056/NEJMp1307084
