As we determine options for how to get affordable epi to people, we are posting samples of what a doctor might prescribe. See our first post on this here: The Poor Person's PEpi Pack Rx.
The generic rejection letter basically says it could be any reason under the sun for rejecting the submission for publication on "social media's leading physician voice". But looking at KevinMD's website, it is pharma advertising driven. It is owned by MedPageToday -- also pharma advertising driven. My experience is that no one minds if you fuss and fume at the problems and status quo, as long as you create more traffic for advertising. But if you actually suggest changing the power structure, getting control into the hands of patients and tangibly reducing advertisers revenues, things change quickly. I am suggesting just that -- having patients have control of the most life-saving medication there is. And we are doing something tangible about it. We are acting to change things practically. It is, admittedly, revolutionary. It seems we will need to work through the people's channels of communication to get the word out. It will be an interesting ride.
The rejected KevinMD.com submission:
The People’s Epi
We fuss and fume. We throw out suggestions. We rage against the machine.
Congress is going to “hold hearings” (roll eyes, sputter, huff). We create petitions “asking" Mylan to reduce the price of EpiPens, and “asking” Congress to get them to lower the price (which Congress will “talk” about). Talk, talk, talk.
I think we have forgotten that we are in America — “the land of the free, and the home of the brave.” We act and talk like we are helpless. We publicize and speak against bullying in school hallways, while allowing mass bullying of the most vulnerable among us. We spend billions in the Middle East to fight oppression and hostage taking of individuals, groups, and countries, while it is rampant and legal in the United States healthcare system. It is time we woke up and remembered who we are. We are the people that believe in “government of the people, by the people, and for the people.” Washington DC is not government. We are.
It is time to stop talking and fuming, and do something practical and tangible. It will take planning, time, energy, resources, organization. We have launched The People’s Epi project — PEpi for short. We are systematically identifying epinephrine options, working with entities to create short term and long term solutions to the epi crisis, doing whatever is necessary to truly innovate, have healthy sustainable business, and truly free markets that work for patients and citizens of the United States. Do we need to establish a pharmaceutical company owned by patients with the objective to help people over maximizing profits for Wall Street? Maybe. Whatever it takes to get effective affordable epinephrine to those who need it, we need to be prepared to do.
Of all things in healthcare, emergency epinephrine needs to be serving patients. We invite you to join us in making this happen. It will take effective, methodical engagement of the public and healthcare. It will take organization of people and processes, which means dedicated professionals, web presence, social media campaigns, staff, time, and money.
Solving the epi crisis together can be the nidus for creating healthcare that actually works. Be the change. dok.us —> PEpi
Marc Braman, MD, MPH, FACLM, FACPM
PS - To the many in the pharma industry who truly want to help people, we invite you to help us change the system. We understand that it is a very few top decision-makers with impossible conflicts of interest that are directly responsible. Ultimately, we are all responsible for cultivating a system that is now so egregiously out of control, resulting in abusing patients for profits. It will take us all working together to fix it.
A great idea and some more research today.... Seems we could come up with one alternative to an EpiPen at about $60 (single dose). It would be even better than an EpiPen or similar in some ways. Stay tuned and help us get this crazy epi situation sorted out! #PEpiproj
So reads the headline: Lifesaving medicines must be affordable
We couldn't agree more. Be the change!
I saw a patient today who was a school bus driver -- has been driving school bus for many years. We really need people like her who really care about kids. Somehow, without me bringing it up at all, she brought up that her boyfriend had to buy and EpiPen and even with insurance it was outrageously expense at $450 out of pocket. He has a severe bee sting allergy and his face and head swell up really badly. When I told her the actual medicine only costs about $1 her jaw dropped open and she about fell on the floor. She sputtered and couldn't believe it. She got angry.
Then she asked about all the kids on her bus with peanut allergies and similar. She realized that they needed to carry similar medicine for their potentially life-threatening allergies. And she was outraged that each and every one of them would be forced to pay $400-600 for $1 worth of medicine. I am outraged too!
Calling all school bus drivers! Spread the word! What if all the school bus drivers across the country took to social media to actually do something about this drug company hostage situation and spread the word about the PEpi Project to get affordable Epi to those who need it. What a difference that would make! I hope this particular driver finds this post and spreads it far and wide. :)
Called another major compounding pharmacy yesterday and discussed options with them. I was shocked to learn that it is illegal for them to create a prescription for someone if it competes with a commercial product in the market -- even for generic medications. It is illegal for them to put a properly prescribed dose of life-saving epinephrine in a syringe ready-to-go and dispense it to a patient because there is a commercial product in the market that has the same dose of epinephrine in it. !?!?
I can understand the rationale for making sure products are monitored and are of consistent high quality. But this situation is far from one of protecting people. In essence, the FDA is keeping reasonable, affordable solutions out of the hands of patients that need them to not die. Unless patients pay extortionist prices that are the envy of the mafia.
In case we haven't really been thinking about what is actually happening, when people talk about the "market" taking care of itself and these are just market forces, it is a scam. This is not a functioning marketplace. This is monopolistic extortion and hostage-taking. What would a real marketplace look like? There would be multiple reasonable choices that encourage quality and limit cost. Obviously we don't have that. Don't let anyone sell you that bill of goods ever again about the pharmaceutical industry and the "marketplace" in America.
Many people don't know what a "compounding pharmacy" is. They are basically pharmacies that still are able to customize medications like pharmacies all originally did. Your typical pharmacy today just takes pills from big bottles and puts them in little bottles and puts your label on the little bottle. A compounding pharmacy actually makes pills, potions, lotions, IVs, etc custom for an individual patient. It makes almost anything possible. They are pretty cool!
I called and spoke with a compounding pharmacy that I use for my patients. "What options are there for alternatives to EpiPens?", was my question. The pharmacist ran through several options, none of them really practical for the typical patient.
I am still confident that compounding pharmacies would be able to create viable options with the right pharmacy and some time and energy.
Please share this request with others and compounding pharmacies in general and ask them to post their suggestions, or contact us directly (firstname.lastname@example.org).
Compounding pharmacies can help us come up with affordable options for the short term, while we work on more polished options for the long term.
I have decided to blog this project.
This is about people -- us. Our health. And us as people collectively taking back our health and our healthcare.
This is about building the pathways and the confidence to change things. Doing things together for the right reasons -- to help each other.
Wednesday, August 24, 2016. I decided to do something about the egregious, outrageous hostage situation in America -- the EpiPen debacle.
Millions of Americans are being held hostage to corporate greed of an unprecedented scale in U.S. history. Life-saving medication is being withheld for ransom. Last I checked, the U.S. doesn't pay ransom to terrorists.