The Washington Post featured an article on the front page of their website two Wednesdays ago was titled: Why do two white Americans get the Ebola serum while hundreds of Africans die? Other than having a highly inflammatory title that discusses an issue that doesn’t involve race at all, this article addresses how economic power opens doors to medicinal access. This is a story that is repeated daily for those that attend our free clinics, or who can’t afford quality insurance.
This is an issue of economics, not ethnicity because the Americans worked for an organization that was willing to negotiate on their behalf and pay many thousands of dollars to the pharmaceutical research company for use of the drug. Until recently no one has advocated for the same treatment on behalf of the various African patients.
The author also mentions that access is a limiting factor. This is in regards to not only being able to transport and keep the vaccine cool, but also administering it correctly, in as much of a controlled setting as possible (this is particularly important as we aren’t sure what complications could occur or need to be treated). Given that the drug is so experimental, we’re not even sure what is the best way to administer it or at what dose. And these questions aren’t only for drugs that are experimental. This is also seen with some new drugs that are released to the open market where the best practice usage of the drug isn’t developed until after it has been in use for several years. Does anyone remember Vioxx, the ‘super aspirin’?
Lastly there is the issue of the ethics of dispensing a highly experimental drug. Let’s not even get in to the ethics of obtaining consent. But if we were to take ethics out of the issue presented here the idea that the “Privileged humans were always going to be the first one to try it” is absolutely nothing new to those who receive help through the free clinic system.
Before we unpack an example, it should be duly noted that since August 6, the last 10 doses of the drug were sent to Liberia and administered, one to a priest who has since passed, two doctors, and several patients. The WHO has determined that the use of the drug is ethical given the catastrophic nature of the outbreak. Marie-Paule Kieny, assistant director-general for the WHO, has admitted that “the shortage of medications is a market failure. It’s a market failure because this is typically a disease of poor people in poor countries and so there is no market…There are no clinical stockpiles”. BUT back to what uninsured patients who don’t have the money, and therefore access to drugs face regarding ethical treatment in the U.S. This story of access and appropriate treatment is a persistent one.
In case you haven’t visited your local free clinic for treatment lately, let me give you a common scenario you face when healthcare is only a right of those that can afford it. Let’s pretend you are a parent of a family of four, there’s you, your spouse, and your children Scooter and Pumpkin. Your family brings home a net income of $47,700 a year which is 200% of the Federal Poverty Level (FPL). And, by the by, you live in Northern Virginia where the average cost of living for a family of four to live a “secure and adequate but modest living standard” as defined by the Economic Policy Institute is $70,719. Now you have advanced diabetes, either type–take your pick, and are presenting with symptoms of neuropathy. You’re losing feeling in your hands and feet as your nerves are dying. Your treatment 99.5% of the time is not as simple as just getting the medications you need, and if you had insurance, could afford. So you’ve gone to your clinic and your prescriber has written you a script…
Scenario 1
In the perfect world, your clinic has a pharmacy and a way to get you the drug you need, Neurotin, or even better the slightly cheaper generic, Gabapentin. And this on site pharmacy will dispense them to you for a reasonably low price, perhaps $5 for a three months supply.
Scenario 2
In an ideal, and still highly unlikely world your clinic has been donated the medication you need, Neurotin. You’re set and pay whatever fee they require, typically under $10. In some cases your clinic may have contracted with a central fill pharmacy, such as NoVA ScriptsCentral, that will fill most scripts (think of the top 200 dispensed drugs) for $5 for a three month supply and can fill and ship your medication to you in less than a week.
Scenario 3
In a much more common scenario your free clinic will have vouchers to take to a retail pharmacy for either Neurotin, or in a just as likely case you will be given a script for Cymbalta or for a generic tricyclic anti-depressant class of drugs. This can be very expensive, from $20 to the full retail price which is around $260 for a 30 day supply. So what is the problem with this? 1) Cymbalta and the anti-depressants are for…depression, this is their indication. The treatment of neruopathy is not the main purpose of these types of drugs and therefore they do not fully treat it, just some of the symptoms. 2) They are not as effective and can lead to other complications. 3) This is very, very expensive. If you are already living on an income that is half of what is considered necessary to live in an area, $20 let alone $260 puts you in a position of having to choose between being healthy or feeding or housing your family.
If your clinic is large enough and has the funding they might have a designated person who will either help you fill out or will fill out on your behalf a PAP (patient assistance program) application for you to receive the drug for free. There are three downsides to this. 1) Most of the PAP companies require some sort of citizenship or permanent residency. 2) When you first apply for the programs it can take well over a month to be approved. Until then you are out of pocket for these medications until they are mailed. Refills can take over two weeks to arrive. 3) PAP company formularies are constantly changing. Just because they have the med you need now does not mean they will in the future.
Scenario 4
The worst case scenario the clinic hands you a script and you have to go out and buy it free market. By the way Walmart has some of the cheapest drug prices if you are in this situation. “Cheap” being a relative term. Good luck.
Free clinics everywhere are fighting a constant battle between receiving funding and giving their patients the best care they possibly can. But money, or the lack thereof, limits the services and drugs they can provide, it limits what patients can afford on their own outside of the direct aid of a clinic, and quite honestly it determines whether patients can even take the time off work and/or afford the commute to the clinic. Because of this patients don’t always see the doctor when they should or can’t. They may not be able to receive the exact medication for the condition they are presenting with; they might have to take another drug which will help control most of the issue even if it isn’t all of it. If they take drugs that require refrigeration, like insulin, a patient might not be able to store it. All of these are factors and choices the uninsured have faced and do face everyday.
What is occurring in West Africa is a tragedy. One that has been fueled because we do not have systems or economies in place to help the poor just because they are human. Our economies are geared to providing products to those that can pay for them. As more articles and news becomes available regarding the plight of those effected take a moment and think that this isn’t just an issue for those people over there. This does affect you, it does affect us, right here. Our patient’s stories may be quieter, and not a contagious viral outbreak, but it does involve millions of people with chronic diseases that will prove fatal in the long run if they too are left untreated.
For the original Washington Post article: http://www.washingtonpost.com/posteverything/wp/2014/08/06/why-do-two-white-americans-get-the-ebola-serum-while-hundreds-of-africans-die/?hpid=z5
For WHO declaring experimental treatment ethical: http://www.washingtonpost.com/news/to-your-health/wp/2014/08/12/as-ebola-toll-tops-1000-who-says-experimental-treatments-are-ethical/?hpid=z6
OR: http://www.bbc.com/news/world-africa-28754160
For more information on the Ebola epidemic, how it is contracted and related symptoms: http://www.who.int/mediacentre/factsheets/fs103/en/
If you want to learn about Vioxx and how it developed it’s best practice usage:
- Alexander Lyon (2007) “Putting Patients First”: Systematically Distorted
Communication and Merck’s Marketing of Vioxx, Journal of Applied Communication Research, 35:4,
376-398, DOI: 10.1080/00909880701611052