The Exploitation of Illness: Part 2 - Playing the "Cure" Game

As I sit down to write this, I close my eyes and wish very hard that I didn't have to write a Part 2.  It's really with a mix of emotions that I sit down to write this: sadness, fear, anger... It's sad as women who are just discovering that they have endometriosis and are attempting to learn more about this disease are being bombarded with inaccurate information that isn't helpful for them.  It's fear as the progress that we have made towards understanding this disease appears to be moving in a backwards direction rather than progressing forward.  And it's anger that people continue to exploit the desire of others to live healthy lives.  You ask "What is she talking about?" 

There has been A LOT of talk in the media lately of individuals being "cured" of endometriosis and of doctors who offer up or support the notion of "cure".  For the record, there is NO peer-reviewed scientific evidence available at this time to back up the notion of a cure.  The causes of endometriosis remain unknown, despite suggestions from some organizations and individuals that they know what is responsible for causing this disease to develop in women.  Again, there needs to be peer-reviewed research available prior to blindly accepting a certain theory of how or why this disease develops.  Until such a time as the cause is discovered, a cure will likely remain unknown.  

Let me go into a few examples of what I am talking about and why it is exploitative of our hopes for a cure.  

#1.  Padma Lakhsmi, co-founder of the Endometriosis Foundation of America along with Dr. Tamer Seckin, has claimed that Dr. Seckin's excision surgery has "cured" her endometriosis.  Newsweek,People, MedPie have all used the word cured when referring to Padma's struggles with endometriosis.  While I am very happy for Padma for getting great symptom relief, this is not the same as having been cured.  Padma has had 4 surgeries in the past 2 years to deal with her endometriosis.  While I do not have any clue as to her medical records, I would think that her latest surgery would have been rather recently, given that 4 surgeries in 2 years averages out to a surgery every 6 months.  This is not the same as a cure.  I know of women from my support group, and myself, who have had symptom relief for an extended period of time following a very thorough lap surgery, only to have the symptoms slowly start to come back.  I truly hope that this won't be the case for Padma as it is for so many other women.  Symptom relief however is not synonymous with "cure".  There are many women out there who lack the symptoms of endometriosis but who are diagnosed when they go in for unrelated surgical procedures, or to explore infertility issues.  It is noble of Padma to want to increase awareness and understanding for this very misunderstood disease, however spreading inaccurate information is not going to be helpful for anyone.  It exploits those who are desperately searching for answers to deal with their disease once and for all.

#2 Dr. Seckin is the doctor whom Padma had declared had cured her of endo and with whom she went into partnership to form the Endometriosis Foundation of America.  Dr. Seckin has used his own funds to open the EFA, and therefore has a lot to gain or lose through its success.  He is promoting excision surgery as the cure for endo, although he contradicts himself when he mentions the word recurrence in the same speech.  I would like to introduce two videos from Dr. Seckin which explains his viewpoint of treating endometriosis:

A. The first one is called "How are women currently being mistreated for Endometriosis?".  Dr. Seckin makes a claim in this video that the pain of endometriosis is caused by scarring.  Yes, scarring does cause pain, however this isn't the full picture.  Research also highlights the role of prostaglandins in creating pain, the role of adhesions in creating pain, etc.  Tissue that has been damaged, as is the case with endometriosis, can also lead towards the creation of myofasical trigger points which can cause pain.  My point is that there are a variety of reasons for someone to feel pain when they have endometriosis.  Dr. Seckin believes that the continued pain of endometriosis is most likely coming from surgeries where the endo was simply burnt off the tops of the linings.  In this video, Dr. Seckin fails to mention that even with his beloved excision surgery, there is a recurrence rate.  

B.  The second video, and by far the most offensive to many women is called "What is a Type-E Personality?".  I took great offense to this particular video.  Dr. Seckin claims that there is a certain personality that he often sees come through the door of his practice searching for help.  He refers to these women as "high-achievers" and goes on to rattle off a few high-powered professions - doctors, lawyers, etc.  He makes it sound in this video as though the personality traits of these women are the cause for their disease.  Last I checked, medical research had made NO correlation between an occupation and disease.  Back a few decades ago, when women started to move into the work-force and endometriosis was just beginning to come to the fore-front in medicine, one of the theories that was put forth was that endo was a "career-woman's disease".  That is, that the disease effected those who had delayed childbirth in efforts to further their educaton and begin their career.  This myth has been proven false, research now knows that this is an "equal opportunity disease of women" effecting women from all social classes, all ethnic groups, regardless of sexuality or childbearing status.  I find it very offensive that Dr. Seckin even makes the suggestion that there is a correlation between socio-economic status and endometriosis.  It has to be taken into account that the services that Dr. Seckin provides are often not covered by insurance, and thus those that are of a lower income bracket often can't afford the most expensive form of endometriosis surgery.  

Dr. Seckin leaves the proverbial door open with these two videos for having something to blame if the surgery is not successful.  In the first case, he could claim "because you didn't come to see me first..." Unfortunately, many women don't see an endo specialist as their first step when being diagnosed.  It wasn't until I started researching after I had a name for my disease that I found that there were other types of specialists that may be of more help.  Also, since the average time between the onset of symptoms and the diagnosis is 9 years, he could potentially claim that it wasn't detected early enough.  He could also claim "Because you had laser laparoscopy, that's why you'll continue to be in pain".  The last claim that Dr. Seckin could make is to blame it on our type-E personality.  "Who you are as a person is making you sick".  

#3  Dr. Redwine is a well-known figure in the endometriosis community who is also on the medical advisory board for the EFA.  Dr. Redwine has long promoted the concept of a "success rate" for his services.  Dr. Redwine, in a 2003 interview published on MedicineNet.com, has mentioned that it has been known for 50 years that excision surgery is a cure for endo. Dr. Redwine as an excision specialist also charges more for his surgeries than other doctors.  When he calculates his "cure rate" I'm left wondering:

a.  How many women can afford to go back for a follow-up surgery for endo symptoms when it costs so much in the first place and many insurance companies do not cover this surgery?  In the Newsweek article on Padma linked above, she has stated that she has had 4 surgeries.  If each of these surgeries cost between $15-$20K or more, how many of us could afford multiple surgeries?

b.  Would we go back to a doctor who claimed that he could likely cure us and we remained symptomatic?

c.  How many patients does Dr. Redwine refer to other specialties believing the problem to be something unrelated to endo when in fact it is endo?  There have been many of us who have played the "referral game" going to urologists, gastroenterologists, rheumatologists, etc.  My dad once made a bad, yet sadly true joke when he asked "Is there any -ologist that you haven't been to?".  

d.  If we travelled out-of-state or out-of-country to have our surgery done by "leading experts" do we have enough time and money to be able to do this again?

e.  How many women, on their long battles with this disease and after throwing their eggs in the final basket in hopes for a cure, admit defeat and don't seek re-treatment?  

There are several things that can influence a treatment success rate.  What is interesting is that Dr. Redwine, would be sitting on a medical advisory board for a foundation that claims a cure for endo when in fact he himself does admit a recurrence rate.  Even the Eshre Guidelines for Treating Endometriosis, Stanford Medical School, and the European Society of Reproduction and Embryology, have all discussed the recurrence rate for endometriosis.  From the research, there is consensus that endo seems to be recurring after surgery and is thus remaining incurable at the moment.  

Its individuals such as these that are making it harder for others new to the disease to learn accurate information and to make informed treatment decisions.  This amounts to nothing short of exploiting individual's quest for knowledge and desire for there to be a cure that will provide them with lasting relief.