The EpiPen Mess and How To Work Around It

Anaphylaxis is frightening — it can and does kill people. It is an acute allergic reaction that affects about 0.5  to 2% of the population, at some point in life, and the frequency seems to be rising as we speak. Symptoms include hives and itches and swelling, which about 20% of the time can affect the upper breathing system and close the windpipe.

In theory any substance that is not included as part of the body can cause it.  I have heard about it being caused by bee stings, snake bites, foods and drugs and such. I have actually treated people for post-traumatic stress disorder caused by an allergic attack.  It is a serious stress to find your windpipe closing up and not know why. The lifesaving immediate emergency treatment is injected epinephrine (adrenaline) and getting the victim to a medical center to follow up with antihistamine and steroids as needed. My own allergies have given me some weird things over the years — lots of positive skin tests.  I used to suffer through “desensitization” protocols — allergen injections that made me sick, and prize-winning hay fever attacks.

Luckily I was working at a French medical center many years ago when I suddenly found myself gasping for breath.  It had been my second exposure, in the hospital cafeteria, to a delicious salad of a local species of” “white celery.” I knew about anaphylaxis and there is little as scary as knowing what can go wrong.  The doctor decided I was not going into shock as far as he could tell, so I got the steroid shot, a little antihistamine to take home, a nice afternoon nap instead of seeing patients myself, and kicked out of the emergency room and sent home and told never to eat white celery again as long as I lived — which should be a normal amount. They had some injectable epinephrine next to me.  Happily they never had to use it. People with a history of an allergic reaction of this level of severity, who have been diagnosed with anaphylaxis need to have this around.  I have often discussed anaphylaxis with patients and prescribed the injection.

Anyone at risk should have a device called the EpiPen. You may have recently read articles in the popular press about a massive price raise by the company who makes EpiPen.  There are people who simply do not have access to this life-saving drug for themselves, or those they love. Such a tremendous boost in cost raised a lot of ire among patients and activists. The company went into crisis mode, and quickly offered to give discounts to consumers.

I can put together all of these facts and this is what I come up with:  We have had a massive price rise, without a major program of “Research and Development (R and D)” to change or improve the drug.  There may have been a “dose change” program, which is vague, sounds like an error correction, and does not account for this magnitude of price hike. The price hike looks gratuitous to me, especially since bad PR seems to have caused the company to go on and offer discounts. To further compromise the situation, one more (and cheaper) brand of emergency epinephrine actually does exist.  The FDA seems to have decided that the second preparation is too materially different from the other to be able to switch one prescription for the other, although some state laws do permit prescrption exchange between these.

My personal and cynical guess is that the company that makes the second brand sells this cheaper because they have a smaller sales force. Whatever. FDA folks may not have all the info and are probably decent folks trying to do their best. So what can a person do who is financially stuck in the middle and wants to live? My answer surprises even me.

If the possibility of getting any form of epinephrine is not an option (and you have fought as hard as you can) because of whatever error was made in the system to lead to this inhuman and obscene situation, there are precedents — meaning other obscenely inhuman situations in American medicine.  I am genuinely disgusted, but casting blame is not my strong suit.  If you or one you know needs protection from the deadly potential of a serious life-threatening  allergic, look in the gut. Yes — I know you can’t see your intestinal flora — this is a figure of speech that I love to use often.  The bulk of medicine (Including psychiatry) starts in the gut.

A recent medical journal article states, “Environmentally induced alterations in the commensal microbiota have been implicated in the increasing prevalence of food allergy.” You are probably asking — as I did — how and why? Hold on for the ride. There is a very ancient practice — maybe dating as far back as 4th century China — called “fetal microbiota transplant.” This is ostensibly a “transplant” of bacteria from a healthy donor to someone who has an illness that may respond to this kind of treatment.

This makes people look at me in shock.  Probably the last thing you expected to have me talk about transplanting.

Now, their is a major “bank” of material at — would you believe — MIT, including fancy sterilized stuff you can give as pills, as well as procedures at the other end of the body. Yes, the end of the body where you eliminate things from your body. It is now legal in the United States only for Clostridium Difficili —  a hospital-aquired lower intestinal infection that is so tenacious that antibiotics have become increasingly useless.  Everything else has to be on an experimental protocol. This sort of thing, which is quite legal in other countries that have all sorts of programs, has been shown helpful beyond the bowel on things like obesity and diabetes type II. From Australia, we have remarkable improvements of neurological degenerative disease.  Parkinson using this procedure. In our US of A, since this is generally illegal, I can’t order it here.  People who want it need to follow a “do it yourself ” procedure.  I am not terribly excited about facilitating that one. The closest we can get to this in America is something called a “probiotic.”  These are things that you take orally that straighten out the bacteria that have colonized your gut.

Over the counter preparations available in pharmacies, healthfood stores and through nutritional suppliers online claim a certain number bacterial colonies and a variety of strains (species) of bacteria. You might see a bottle labeled with 5 or 12 or 50 billion cells and a half a dozen or 20 or whatever strains.

For a long time I told folks that I thought they would be better off with a large amount of organisms, and lots of species. Since then, I have learned that a lot of the species that are in such preparations don’t even seem to make it to the colon. Every time you choose a treatment, it is a question of advantages and risks.

Contrary to what you hear elsewhere, there is no “mainstream” science and alternative science.  Science is science, whether governments of organized groups recognize it or not.  Science exists independently of some stamp of approval. Adrenaline is the standard of care for anaphylaxis related death prevention. If that is not available, it is reasonable to look at a probiotic.

The one I take only has one species, but it seems to work.  I take it myself for a variety of ills. It works.