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Privacy Rights For Infertility Patients (Updated)

UPDATE as of 1/27/2010:

I emailed back and forth with RESOLVE staff today. They expect the legislation (discussed in this post and the attached blog comments) to be voted on in Michigan’s State Senate but the date for this vote has not been announced. With permission from RESOLVE to use their logo as part of it, I have created a blog badge that you can install on your blog:



If you install this badge, please link to THIS page containing updates on the situation. By installing this badge on your blog, you can support the rights of infertile patients. By directing blog traffic to RESOLVE’s page on the Michigan legislation, you can help get the word out to more people. You can also contact RESOLVE directly to see how you can help: info@resolve.org. I personally believe this legislation is an affront to infertility patients everywhere.

———————————————————————————————————————–

I am writing this post about bills.

No, not that kind of bills. Although, that got your attention… didn’t it?

Actually, I am writing to draw your attention to an issue involving legislative bills.

Are you infertile? Have you struggled with infertility in the past? Do you know someone who is infertile?

If so, you may want to read this link regarding startling legislation pending in the state of Michigan:

>>> RESOLVE: The National Infertility Association <<<

If these bills pass, I believe the impact will be on far more than Michigan residents. I think other states could follow suit with similar legislation that would potentially invade privacy rights and limit or prohibit access to in vitro fertilization (IVF) for a great many people.

Should people's dreams of becoming parents be shattered by legislators? I don't think so.

When I discovered the RESOLVE link via Kelly Damron today, I was shocked to read its contents. I felt compelled to write about it here because I believe these bills represent potentially precedent-setting legislation that could severely impact many infertility patients.

If you are a blogger and are reading this post, I urge you to consider posting about this subject on your own blog as soon as possible. Infertility patients deal with issues including grief, stigma, emotional pain, physical pain associated with various infertility treatment, miscarriages/pregnancy loss for some patients, endless strings of medical appointments, adoption red tape for some, etc.

Do we really need a government body to add more barriers for infertility patients? For heaven’s sakes, aren’t there enough obstacles already?

Do infertility patients really need legislators invading their privacy and restricting their access to legal procedures such as IVF? I think not. I think infertility patients suffer enough. I think the last thing they need is legislators in their business. Let’s stand up for infertility patients.

RESOLVE is right when they say:

“We contend that fertility patients should demand the same right to privacy as any other patient. We should not be singled out as undeserving of the sanctity of the doctor-patient relationship”.

Why indeed should infertility patients be singled out? Infertility patients DO have the same right to privacy as any other patient.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Privacy Rights For Infertility Patients (Updated)

24 comments

1 PoobaNo Gravatar { 01.23.10 at 10:10 pm }

Are they serious? That’s just crazy. And ridiculous. And wrong. I was wondering, did you ever have a problem with infertility because of your endo?
.-= Pooba´s last blog ..Pooba’s Guide To Surviving Your Colonoscopy =-.

2 Kelly DNo Gravatar { 01.24.10 at 12:15 am }

Jeanne, Thank you for posting this information on your blog. Hopefully others will take action too so that the legislation in MI can be defeated.
.-= Kelly D´s last blog ..MI Residents Take Action – IVF Treatments at Risk =-.

3 JeanneNo Gravatar { 01.24.10 at 2:32 am }

Pooba:

Sadly, they are serious. I know it’s hard to believe but they are quite serious. When I read Kelly Damron’s link about it today, I couldn’t believe what I was reading. I am hoping that as many people as possible post about this quickly… as the legislators will be voting within days. It’s wrong, alright! Even before I got diagnosed with endometriosis (i.e. the first 10 years of the 28 years in which I have lived with it), I knew my symptoms were NOT normal. I harbored a secret, deep fear of infertility for many years… the 10 pre-diagnosis period and for many more after diagnosis.

I’ve had 7 surgeries. Of these, 4 took place before I even met my husband. So, I was scared (very) that I would not be able to conceive. At times, I got a bit obsessed with it. It was my worst fear, to tell you the truth. When I met my husband, I told him about my endometriosis on our first date. I was so scared at the idea of someone leaving me once they learned that I might be infertile that I told him up front. (I couldn’t bear the though of growing attached to someone and having him leave me over concerns about infertility).

First date or not, I “knew” that this was not a typical first date. (I knew he was “the one”). I knew that I needed to test the waters for how he would react from square one. He handled it very well and I was very relieved. Within a couple of years, we were married. My fears hadn’t left me. I’d read enough about endometriosis to know the odds and I was scared. Having had 4 surgeries before attempting to conceive, I was worried. My body had betrayed me in so many other ways by that point!

As it turns out, I was extremely fortunate regarding conceiving. When I talk with my “endo sisters” and friends battling infertility and when I watch people go through the hell Alicia and Josh did for the past 7+ years, it breaks my heart. It is very common for me to cry as I read their blogs.

So, the answer to your question is that I was extremely fortunate in that I was able to conceive and carry to term. Not a day goes by that I don’t realize how very fortunate I am to be a mother. I do not pretend to understand what it is like for others to battle infertility and miscarriage/pregnancy loss and I can’t pretend to comprehend adoption loss.

After attending monthly endometriosis support group meetings from 1992 – 2008 and after meeting lots of people online, I have talked with hundreds of women who struggle with these issues. While I don’t have firsthand experience, I have made infertility one of the primary topics I write about here because I feel so passionately about the need to advocate for infertility patients, educate society about how best to support couples going through this nightmare, and do what I can to provide support, information, and resources.

This is a cause very near and dear to my heart. The bottom line is that our society does NOT provide infertiles with the support they need to deal with the living hell that is infertility.

Kelly D:

Thank you for bringing it to my attention in the first place. I find this legislation very troubling on many levels. I too hope that others will take action so that the legislation in MI can be defeated.

~~~

Jeanne

4 WordyNo Gravatar { 01.24.10 at 2:59 am }

I absolutely agree with you. We deserve to have the same privacy as everyone. And we ALL deserve to have privacy. There are enough problems, without government officials sitting around thinking of new way to make life even more challenging than it already is.

Wordy
Word Designer
.-= Wordy´s last blog ..Game Time Saturday Biltmore? =-.

5 JeanneNo Gravatar { 01.24.10 at 3:07 am }

Welcome Wordy!

Yes, this story really got to me. With just a couple of days until the vote on this legislation, I am trying to do everything in my power to get the word out to as many people as possible. I find these bills very troubling. Thanks for stopping by.

Jeanne

6 WordyNo Gravatar { 01.24.10 at 3:15 am }

Hi Jeanne,
Thanks for the welcome. I don’t live in Michigan, but I surely hope the bill does not go through.

I’ve been trying to figure out how to follow you, but I must be blind in one eye and can’t see outta’ the other one ’cause I sure can’t figure it out. Help???

I absolutely agree with you. We deserve to have the same privacy as everyone. And we ALL deserve to have privacy. There are enough problems, without government officials sitting around thinking of new way to make life even more challenging than it already is.

Wordy
Word Designer
.-= Wordy´s last blog ..Game Time Saturday Biltmore? =-.

7 JeanneNo Gravatar { 01.24.10 at 3:27 am }

Wordy,

I don’t live in Michigan either but I hope those legislators get bombarded with mail from everywhere. The more people hear about it, blog about it, and speak up… the better.

There is a large blue button in the top of the right sidebar under “Subscribe to RSS”. This is where you can sign up for an RSS feed to follow my blog. You’re not blind. You’re probably just accustomed to Blogger’s “follow” function. I switched from Blogger to WordPress and no longer have that feature. (Mine never worked right anyway but I’ll refrain from telling my “My Blogger version was a lemon” story).

It really is mind-boggling… the six bills in question! I hope they hear from enough people to realize that voting for such intrusive bills is not in the best interest of their constituents… or their political futures when they are next up for re-election.

Jeanne

8 WordyNo Gravatar { 01.24.10 at 3:39 am }

Thanks, Jeanne. I signed up to follow and I will write and do what I can to help. I think recent political activities may just be bringing the realization of the voters’ rights back into focus, at least for some politicians. Let’s hope, anyway.

Wordy

.-= Wordy´s last blog ..Game Time Saturday Biltmore? =-.

9 YayaNo Gravatar { 01.24.10 at 9:03 pm }

(((Hugs)))
Thank you for the awareness. It sickens me that fertility treatments come down to money….
.-= Yaya´s last blog ..Orange You Glad It’s Saturday?! =-.

10 JeanneNo Gravatar { 01.25.10 at 1:59 am }

Wordy:

Thank you for subscribing to my blog! Welcome again! I am hoping that as many people as possible will write in and blog about this topic because I truly believe it would set IVF backwards, if passed, and the disrespect for the privacy rights of infertility patients is astounding. Like you, I hope the Michigan bills will be defeated. Thanks for your interest in helping this cause!

Alicia:

It sickens me that fertility treatments come down to money too. What disturbs me even more in this case is that there are lots more issues at stake besides whether people would be able to afford IVF in MI if these bills pass. The infringement upon infertility patients’ privacy is also very disturbing. The precedents these bills would set are also very troubling. This is upsetting on so many levels. Infertility patients suffer enough (!) without intrusive legislation such as this being even dreamed about (in a nightmare!)… much less passed into law. It’s truly disturbing!

~~~

Jeanne

11 EndochickNo Gravatar { 01.25.10 at 10:28 am }

This is absurd! Who are they to dictate such demands on the public of Michigan and determine the amount of embryos stored. This should be up to the couple and the physician. With most insurances either undercovering or not covering the cost of embryo collection and storage, the couple is burdened by this cost and if they so wish to store 1, 2, or 10 embryos then that choice should be theirs! If they have the funds to store 100, then so be it. This is a prime example of government over stepping their bounds and placing their fingers in the public cookie jar where it doesn’t belong! Our voices need to be heard and they NEED to listen! Legislation like this CANNOT occur, not even on a state level.
.-= Endochick´s last blog ..Speak Up! =-.

12 Jannie FunsterNo Gravatar { 01.25.10 at 11:54 am }

“Infertility patients DO have the same right to privacy as any other patient.” Of course!! I don’t even see why this would be an issue in this day and age.

P.S. You got an award on my blog, in today’s post!!

xo
.-= Jannie Funster´s last blog ..(And I Thought “Leaven” Was Just A Bread-Baking Thing!!) =-.

13 JeanneNo Gravatar { 01.26.10 at 2:23 am }

Endochick:

I agree with you that it is completely and utterly absurd! This was one section in the RESOLVE page that seemed to capture some of the many concerning aspects about such legislation:

“Under these bills, the government would collect and publicize intimate information about infertility patients. The bills would unreasonably burden the treating physicians and would certainly raise the cost of medical treatments to have a baby”.

The notion of collecting and publicizing patients’ information is truly mind-boggling to me! The notion of making infertility treatment even more difficult to obtain that it already is (financially, by infringing on patients’ privacy rights, by potentially driving doctors out of the area… in this case in the state of Michigan) is very sad to me. Infertile couples already suffer enough! Don’t they? Of course they do. This legislation is very disturbing on numerous levels.

Jannie:

Exactly! How anyone could disagree with this statement is completely beyond me:

“We contend that fertility patients should demand the same right to privacy as any other patient. We should not be singled out as undeserving of the sanctity of the doctor-patient relationship”.

It absolutely blows my mind. It is very upsetting. These legislators are meddling into the lives of couples whose dreams of parenthood could be profoundly impacted if these bills pass.

Now, switching gears… here is my poetic response regarding the lovely award that I thank you for:

Once upon a time in a faraway land so truly grand
There lived a site called “Jeanne’s Endo Blog”…
(You might remember hearing of it)?

You’ll remember it, I know
It was the first blog of mine to which you did go
(Which made it very special)

My fellow bloggers were so kind
Gave my blog awards & in the sidebar you’d find…
Them lined up in a neat row

One day I did receive some awards for it
Not once, not twice, but actually thrice
In the very same day…

At the risk of appearing less than gracious
I decided my sidebars were just not spacious
(…enough for all of them to fit)

You see, I did not have enough real estate
To hold the awards from my blogger friends great
So I made a decision…

Yes, months ago I had to concede
That I simply could not proceed
Posting every one of them

So, I thank you for the award so kind
And I hope that you will find
I am very thankful

A funny lady has shown great humor
People, I swear this is not a rumor
(Yes, I mean The Funster)

See, Jannie, you’ve inspired me
To search and find my inner glee
And not always be so darn serious

For while you won’t see the award posted here
You’ve touched my heart; never fear
Jannie, you are special!

P.S. Special postscript for The Funster: I especially appreciate that you gave me an award related to humor because I have been trying to insert some levity on my blog when I can. I write about some very serious topics and sometimes it really helps to have a sense of humor to get through the sad, the serious, and the dramatic. So, I appreciate you thinking of me for this particular award. Hanging around with you, Jannie dear, has helped remind me that humor is important, “laughter is the best medicine”, and when things get too serious for too long without a “break”… it’s not healthy. So, thank you!

14 Jannie FunsterNo Gravatar { 01.26.10 at 8:58 am }

Gracious / spacious and rumor / humor are such great rhymes.

No prob on not posting the award, no prob at all.

As to this post. why would the patients names have to be public? I just don’t get it.
.-= Jannie Funster´s last blog ..(And I Thought “Leaven” Was Just A Bread-Baking Thing!!) =-.

15 JeanneNo Gravatar { 01.26.10 at 6:10 pm }

Jannie,

Thank you for understanding.

As far as their proposal to make patients’ information public, it makes no sense at all. I sure hope the bills get voted down tomorrow. They are wrong for so many reasons.

Jeanne

16 WalterNo Gravatar { 01.27.10 at 2:29 am }

That’s a cruel legislation. Perhaps those people need to know how painful it is suffer infertility. I had my share of such experience and it hurts knowing that I’m incapable.

17 JeanneNo Gravatar { 01.27.10 at 3:23 am }

Welcome Walter!

I agree that the proposed legislation is cruel. It certainly does seem that only those fortunate enough to have never been personally affected by infertility could even conceive of passing such legislative bills. I am sorry that you have had to suffer the pain of infertility. Let’s hope this legislation is not passed!

Jeanne

18 PoobaNo Gravatar { 01.27.10 at 4:35 pm }

Wow, that is amazing that after all you’ve been through, you were still able to conceive, you truly are blessed! I can’t imagine how infertility would feel, my husband and I haven’t even starting trying yet. I too have fears that I will have problems conceiving, actually it’s my biggest fear! With my Crohn’s disease and medications and immune system issues I am just scared to death.

(Come on over to my blog, I left you a little surprise!)
.-= Pooba´s last blog ..Down To Bid’ness =-.

19 Jannie FunsterNo Gravatar { 01.27.10 at 8:05 pm }

Blogging is certainly changing the world — and not just my world, but everybody’s world.

Blogs like yours which get the info on this out cannot be underestimated. A post like this can go places and help so many, it’s just amazing what this medium can do. Thanks, Jeanne!!
.-= Jannie Funster´s last blog ..(And I Thought “Leaven” Was Just A Bread-Baking Thing!!) =-.

20 SonjaNo Gravatar { 01.29.10 at 12:05 am }

Thanks so much for creating the blog badge!
.-= Sonja´s last blog ..Blog Award From Yaya! =-.

21 JeanneNo Gravatar { 01.29.10 at 12:38 am }

Jannie:

I agree. Blogging is absolutely changing the world… everybody’s world. You’re right!

Thank you for your kind words. When an issue like this comes to my attention, I feel a strong compulsion to take action in any way I can to help the cause. Infertility patients go through such heartache! The last thing they need is government intrusion into their very personal family building decisions.

Yes, blogging really is an amazing medium. Bloggers have the power to help good causes and create awareness of important issues. Thank you, Jannie, for your feedback and interest on this important topic!!

P.S. Feel free to grab a RESOLVE badge for your blog if you are so inclined. ;)

Pooba:

Yes, I am very grateful every single day. I am all-too-aware that it could just as easily have been me struggling for years on end trying to conceive. It pains me to watch friends like Alicia and Allison go through such turmoil on their journey to parenthood. I truly did fear that the 4 surgeries I had before trying to get pregnant might have caused scar tissue or in some way made conceiving challenging or impossible.

I worried that endometriosis would make me infertile. I know how fortunate I am and I spend a fair amount of time fighting for the rights of infertility patients because I know so many who struggle with this emotional and physical minefield, because infertility patients’ rights are no less important than any other patients’ (regardless of how this Michigan legislation is written!), and because I am passionate about doing my small part to help infertility patients navigate their painful, emotional journey pursuing parenthood.

I am sorry that you face fears of infertility due to your chronic health issues. I know what it’s like to live with that fear. I’m sorry that is weighing on you!

I emailed you about the surprise you mentioned but I’ll have to make it over to you blog ASAP as well. Since I’m too tired now (after a day involving driving through snowstorms to see my doctor in the city) to write a poetic response quite like the one I wrote Jannie about the award she gave me the other day, let me just take this opportunity to say THANK YOU. ;)

P.S. Feel free to grab a RESOLVE badge for your blog if you are so inclined. ;)

Sonja:

Thanks for stopping by and thank you ever so much for posting the badge I made on your blog. I really appreciate it! The more bloggers display these, the more traffic that RESOLVE page on the Michigan legislation will get. The more people read that, the more Michigan residents will write in to the legislators.

I received an email from the Executive Director of RESOLVE yesterday and she indicated that when another state attempted to pass legislation that was NOT in the best interests of infertility patients in that state, 1000s of people wrote in and called the legislators there (Georgia) and the legislation was defeated. She said that bloggers were helpful in that case at directing traffic to the RESOLVE site (like we’re doing).

So, my hope is that we can recruit as many bloggers as possible to post the badge and link to the RESOLVE Michigan page mentioned in this post! I believe by banding together with as many bloggers as possible, we CAN make a difference! So, please help spread the word to anyone you think might consider posting the badge.

I have posted this badge/link on Facebook too so that my Facebook friends (many of whom blog about infertility and/or endometriosis) might consider posting the badge.

THANKS for posting the badge/link to RESOLVE!

~~~

Jeanne

22 Arizona Infertility Patients’ Rights In Immediate Peril — ChronicHealing.com { 02.13.10 at 11:09 pm }

[...] Privacy Rights For Infertility Patients (Updated) [...]

23 JeanneNo Gravatar { 02.14.10 at 1:45 am }

Readers,

Click the link in the comment above this one “Arizona Infertility Patients’ Rights In Immediate Peril” to see a newer post about legislation pending in Arizona. Like the Michigan legislation, it stands to hurt infertility patients. Unlike the Michigan legislation, there is a vote set for just days away. If you know any Arizona resident willing to take just a few moments to visit the RESOLVE site to use the forms there to contact their representatives about their opposition to these bills, that would be great! A person does NOT have to be an infertility patient to write in. Any resident of the state can write in. Thank you!

Jeanne

24 Terribly Tired Today — ChronicHealing.com { 02.24.10 at 3:26 pm }

[...] HERE, HERE, HERE, HERE, and HERE [...]

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