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The Parents Via Egg Donation Organization: March 2010

Tuesday, March 30, 2010

Who Are The Infertile?

I read this week another sensationalism piece about egg donation. It's clear the author didn't do his homework (is that a surprise?), had he done his homework and actually talked to real patients who undergo treatment through egg donation he might have written an entirely different article.

Articles like the one above used to really make me angry but now my reaction is a roll of the eyes as I mutter "whatever" under my breath as I go on about my day. To be honest, I am not sure which is worse and less productive -- being angry or apathetic. Regardless it's clear the media doesn't have a clear idea who we are, what we endure, or what we want. And so they just write whatever to sell papers, articles, and advertising.

The industry is partly to blame because they really don't know who we are, what we endure, or what as patients we need or want. If you look at RESOLVE the faces on resolve are so serious and somewhat sad. Then there is ASRM -- most of what you see on ASRM's site mostly revolves around menopausal women -- and then add The American Fertility Association into the mix, as well as INCIID, and even PVED, and you now have four other organizations all representing different things.

Now that in itself isn't a bad thing -- I think different organizations portraying different types of patients are clearly showing that infertility doesn't affect just one group of people, we are a huge melting pot after all, and infertility is an equal opportunity disease. What I am meaning is that the message coming from each of these organizations isn't the same -- and I feel strongly that we as a collective need to have a summit of sorts and agree on one core message that we are wanting to say and then say it. A launching pad of sorts I guess.

I had this really great discussion with Dr. Evelina Sterling, PhD about the above article and other sensationalistic articles and books about infertility that have been written over the past two - three years and Dr. Sterling reminded me what the Breast Cancer folks did regarding their message.

The media had covered Breast Cancer for years and the message they portrayed was horrible. It was negative, down trodden, sad, and for the longest time if you uttered the words "breast cancer" the immediate thought was "death sentence". The Breast Cancer folks decided they'd had enough and banded together to present a unified message of who their patients were, what treatment options there were, that breast cancer was not an automatic death sentence, that patients due survive and they survive quite nicely and often come back strong, and sometimes stronger than before. They made an effort to develop relationships with the media to get their message out. And now that message is out and the stuff we now see in the media about Breast Cancer is what? Positive, strong, empowering, educational. It's not sensationalism at all. And why?

Because it's not tolerated, that's why.

And the same should be said and done for those of us struggling with infertility. We need to band together and say "Okay, we are no longer to buy into or ascribe to the ridiculous pieces the media chooses to write because the media is ill informed. We are going to educate the media so they really know what they write about. We are going to form relationships with the media and help them learn about what we go through. And then and only then will we be represented fairly."

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Friday, March 26, 2010

Being a parent is not a luxury

This whole healthcare reform bill has my knickers in a knot. Why? Because there are so many unknowns. It's not just about everyone have health care insurance and having the ability to go to the doctor (which is a good thing) -- it's about what's going to be affected.

In examining the bill there is nothing in the bill regarding the coverage of infertility. One benefit of the universal healthcare plan is that insurance companies cannot deny coverage to couples who suffer from infertility because it was deemed a pre-existing condition. However, in terms of covering infertility treatments or in-vitro fertilization, none of that is made mandatory under the bill for insurance companies.

So where does this leave us? In the same exact place as we were before. Some states cover infertility as it's a state mandate while the majority of the others do not cover infertility, IVF and what not.

This totally fries me. Why? Because having a child is NOT a luxury. I am so tired of Reproductive Endocrinology being compared to cosmetic surgery. There's a huge difference. Having a child is not the same breast augmentation, tummy tucks, face lifts, or Botox injections. It's about getting the help our bodies need to do something we should be able to do naturally. Even if it's something that's elective and we choose to do.

I can't tell you how many conversations I have had with individuals who don't understand or get what egg donation is all about who are more than happy to tell me they think that we "Mom's over the age of 40 who are contemplating having children should realize this is totally a luxury much like cosmetic dentistry or cosmetic surgery.

"Why don't you just adopt" or "Why don't you become a foster parent?" "There are worst things in the world than being childless, send money to a child overseas."

Ugh!

Infertility is a disease just like Diabetes, Coronary Artery disease, Cancer, or Rheumatoid Arthritis. We would never ever deny a diabetic insulin, a heart patient cardiac medicine, a cancer patient chemo, or an arthritis patient medication. We would treat these patients appropriately and partner with them regarding their care.

Why can't the same be said for infertility? Why is infertility treated as the red-headed step-child? And how is having a child even remotely considered a luxury? I recognize that we have the Bobbi McCaughey's, Kate Gosselin's, and the Nadya Suleman's of the world who have had high order multiples. I recognize that having that many babies all at one time is not always the best choice in the world. But ask these mothers if they were to do it all over again what they would do and they are going to tell you they couldn't imagine their life without the children they bore and they'd do the same thing all over again.

I will be the first to tell you that the solutions to the health care issues we have in the USA are not easy. I am not even sure myself what they would be -- but I do know that it would be nice just for once if we the infertile could be cut a break for once, receive some help without having to be for it and most importantly have our infertility recognized for what it is. It's not something we have caused through diet, lack of exercise, too much exercise, eating too much bacon, or having one too many martini's. Infertility is generally a genetic thing that affects 6 million individuals in the USA every year. So this isn't something that's only affecting a "handful" of individuals each and every year. This is affecting oodles of people each and every year.

Now I realize that the infertility industry is a billion dollar a year industry. Everyone wants a piece of the pie. I have even had conversations with others in the industry who say that RE's really don't want a cure for infertility because it would take away from their bottom line.

I could approach this two ways. I could be appalled at the very idea that RE's would really feel this way or I could have the attitude of - "Okay everyone needs to make a living, if they can help me have a child then I am thankful for the technology." However, if my fellow diabetics and cancer patients are receiving help from their insurance companies (which they should) to help pay for treatment for their disease why can't we?

I am here to tell you - being a parent is not a luxury I don't care what anyone says.

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