Ask Harry: Orilissa's $10K Price Tag, and How Many Endometriosis Surgeries Should I Have?

Harry Reich,
Posted on Aug 10, 2018

Above, Dr. Harry Reich (center) and wife Elizabeth (far right) pose with colleague Dr. Sarah L. Berga* at a recent EndoFound event.*

Do you have a burning question for EndoFound’s Honorary Medical Director Emeritus and Senior Medical Advisor, Dr. Harry Reich? E-mail him at harry@endofound.org or visit EndoFound’s official Instagram, Facebook or Twitter, tag us and ask a question with the hashtag #askharry, and you could see your answer featured here!

I am not much of a fan of Instagram as I don’t know what it is, so, of course, I have never seen or used it. However, I was intrigued by the following reader question:

@drsalliept asks: I'd love to know Dr. Reich’s opinion on the [FDA's] approval of Orilissa despite [The Institute for Clinical and Economic Review] ICER’s lack [of] recommendations and despite that, it does not treat the disease, and it causes bone loss, suicidal ideation, hot flashes and much, much worse. It is one of the most pharma-driven disasters in women's health to hit the market and sets the movement to bring excision to the forefront back another 50 years.

I've said it before, and I'll say it again: endometriosis is finite. If you remove it all, it's gone. If you don't remove it all, whether by not having surgery or having incomplete surgery, you end up with the same problem you began with: endometriosis. To address your opinion that this would set the movement of excision surgery back another 50 years, I strongly disagree. Here's why: I believe AbbVie's new endometriosis drug Orilissa (Elagolix)'s costliness will push more women to consider surgery first. Check out this headline: AbbVie prices new endometriosis drug at $10,000 a year

That is a lot of money to spend on one drug year after year. Wouldn’t it be much easier to have one operation, maybe two, and be done with endometriosis? I think so!

Orilissa will cost patients $845 every four weeks, without insurance. Most surgical fees for endometriosis surgery can be as low as $10,000. I believe that for most women with insurance, excision surgery is a much better option than medical treatment.

Orilissa claims to manage endometriosis pain during menstruation and intercourse and at other times.

The drug works by reducing production of the hormone estrogen. That caused side effects in some participants, including hot flashes, headaches, and bone thinning. Just like many other anti-hormonal treatments prescribed for endometriosis, Orilissa won't work for you if you're trying to become pregnant. (According to Abbvie's website: Do not take Orilissa if you are trying to become or are pregnant as your risk for early pregnancy loss may increase.)

Now, let's compare costs!

Readers: what do you pay for Lupron, another AbbVie Inc product?

I ask this because I am now on Lupron. To my knowledge, Lupron was approved for the treatment of prostate cancer, not endometriosis. [Editor's note: Lupron is FDA-approved for endometriosis and for anemia associated with uterine fibroids.] I did not prescribe Lupron to my patients, so I have no knowledge of what it costs for the many women who have used it or are currently using it. I take Lupron, and I do know that it costs me $1,500 every three months with Medicare. The pharmacy says that otherwise, it will cost me $5,000 every three months.

In closing, taking Orilissa, or any prescribed drug is ultimately the patient's choice. Don't let your doctor talk you into it if you don't want to take it.

@da_bomb.shell_ asks: How often should someone have laparoscopic surgery to remove endometriosis?

One time! Three at the most. Ask for a pathology report and video to document what was done.

@junoassospita asks: I was told I could have adhesions on my small bowel. How do you find the right specialist for cleaning that up and finding the right treatment from scarring due to a bad [laparoscopic] procedure? I have tissue build-up around my belly button and other areas from endo as well as a previous surgeon using a laser to remove tissue rather than cutting pieces out. My current doctors don't want to open me up again, fearing I might get more scar tissue from it but it's painful, and I want more relief.

Avoid surgery unless your adhesions cause intermittent bowel obstruction, constipation or colicky pain that is very severe and comes and goes. An adhesion specialist should separate the loops that bind the bowel starting from the pelvis up to the upper abdomen.

@schrodingerskitten_ asks: I just had laparoscopic surgery to remove a softball-sized cyst from my ovary. I have had endometriosis symptoms since I got my period, but they have worsened since I had my daughter. (I actually hemorrhaged after a C-section, which no one could explain). The cyst, which my dr was “90 percent” sure was an endometrioma, turned out to be a simple cyst. She said that she found no other evidence of endometriosis, and the lab reported the same. I feel lost because I felt I finally was going to have proof of the endometriosis symptoms I have battled for years, and I’m actually devastated not to have answers of what I go through yet again. Is it still possible that I have endometriosis, or could it be something else?

Sometimes it is difficult to think that you have one thing and find out that you don’t. Again, especially in cases like this, a video of your surgery would be very revealing and helpful.

Editor’s note: The opinions, beliefs, and viewpoints expressed by Dr. Harry Reich in this column are solely his own and based on his experience.

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