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Kansas Is Killing Me

It is Endometriosis Awareness Month. While endometriosis does not necessarily result in infertility, it certainly does cause infertility for a significant percentage of endometriosis patients.

Before I start, let me ask readers to please indulge me by sticking with me on this post even if they do not see what it has to do with them. I will explain further into it how it potentially affects far more people than it would first appear.

(Photo credit – myonlinemaps.com)

Kansas is killing me.

When I read the proposed legislation in Kansas (details below), I was astonished. I swear it’s the worst anti-family legislation yet… out of all the states I’ve written about here lately. (Anyone who reads this blog regularly knows I have been writing about this topic a great deal). Kansas is really killing me, though.

Some of you may be wondering, “Jeanne, what are you talking about?” Let me explain. Kansas is the latest in a string of states to introduce anti-family legislation that absolutely tramples the rights of infertility patients to be able to obtain treatment for their infertility.

Click yellow badge below for information from RESOLVE: The National Infertility Association:

As I have written about on more occasions than I care to remember, numerous states have introduced profoundly anti-family bills that would limit or quite possibly even prevent infertility patients in those states from obtaining medical care for their infertility.

This discrimination against infertility patients cannot be tolerated. Not only is it cruel to take infertility treatment options (used for decades) off the table, not only does it invite government intrusion into very private matters that should be handled between the infertility patients and their physicians, but it sets the stage for legislators to invade the rights of far more than just infertility patients.

The legislation suddenly being introduced in state after state now is most certainly an attack on the rights of infertility patients.

It also sets a dangerous precedent that can affect all sorts of patients.

If state legislators get away with stripping infertility patients’ rights, what is to stop them from stripping other patients of their right to medical treatment for their condition(s)? The way I see it? NOTHING!

I believe the Kansas legislation is the worst yet in regard to the recent spurt of states introducing anti-family legislation. It is so outrageous that I can scarcely believe my eyes when I read what is being proposed.

Below is the most recent update available from RESOLVE: The National Infertility Association:

Updated March 9, 2010

On March 11, 2010 the Public Health and Welfare Committee of the Kansas State Senate is expected to vote on one of the most intrusive, anti-family pieces of legislation RESOLVE: The National Infertility Association has ever seen. On behalf of the more than 55,000 couples in Kansas who are trying to have babies in the face of infertility, RESOLVE strenuously objects to Senate Bill 509.

To immediately send a letter to the Senate Committee voting on SB 509, click here.

To read the entire bill, click here.

In vitro fertilization (IVF) has been practiced in this country for almost 30 years, bringing more than 50,000 babies to overjoyed couples each year in the U.S. alone, and something approaching 3 million babies worldwide. This medical treatment is mainstream, medically proven, and accepted.

Yet, after 30 years of successful IVF therapy, the Kansas legislature has decided to single out this life-giving, pro-family medical treatment from among all others and subject it to a massive regime of Governmental surveillance and publicity. The Kansas government proposes to track the procreation of a group of citizens, mandatorily and without their consent.

Among the many intimate details about women that will be tracked, reported, and potentially publicized to the public under SB 509 are —

• How many eggs a woman produces, their quality, and fertilization rates – this will be reported to the Kansas state government;
• How many embryos a fertility patient produces and how many are transferred to her uterus – this will be reported to the Kansas state government;
• If a fertility patient has a miscarriage – this will be reported to the Kansas state government;
• The private medical decisions a woman may make in the course of her pregnancy – this will be reported to the Kansas state government;
• How a couple decides to handle their surplus embryos (e.g., whether they cryopreserve them or donate them to research) — this will be reported to the Kansas state government.

And this is only the tip of the iceberg. It takes 113 lines of type to list all of the data, statistics, and other information that clinics, laboratories, and third party reproduction agencies are going to have to report to the Kansas state government on every single patient, treatment, and client they encounter.

But it doesn’t stop with the government. Infertility patients’ private information can be given out to private groups, who can publish it anywhere – even on the front page of The Topeka Capital Journal or The Wichita Eagle.

Besides constituting an unprecedented violation of the privacy all patients rightfully expect when receiving medical treatment, these complicated reporting requirements will cause medical costs and agency costs to skyrocket. This will only add to the terrible financial burden faced by most infertility patients in Kansas, since Kansas is one of the states that does not require insurers to cover reproductive medical treatments.

The interests of infertility patients are not the goal of this legislation, for indeed, infertility patients already know how many eggs, embryos, etc. they have. Rather, it looks as if we are being used as pawns to achieve political ends that have nothing to do with our medical needs.

The real purpose of SB 509 is revealed in Section 5, which lists how this collected information can be used. First, the collected information will be trolled by law enforcement officials, looking for violations of law in order to bring charges against doctors (see Section 5(c)(2) and (c)(3)). This will have the effect of discouraging doctors from practicing reproductive medicine in Kansas, leaving needy patients with no options.

Second, Section 5(d) authorizes the department to release the information to any “public or private entities for statistical, research or educational purposes.” The pooled data about infertility patients’ private medical treatments is allowed to be given out to any entity that wants to perform statistical analyses? To force involuntary disclosure of people’s personal, intimate reproductive medical treatments and then farm it out to any entity – private or public – that wants to do a statistical review, is exploitation. There is no limitation whatsoever on who can obtain this information and how they can then publicize it.

We are concerned there is a political goal here: to expose infertility patients’ private information so that people who oppose in vitro fertilization or oppose certain decisions about unused embryos can use that data to restrict access to care.

The Bills further impose harsh penalties on doctors or agencies that either fail to report or who disclose collected information in violation of the bill: a felony conviction that carries a prison sentence of 5-7 years. This may look like a protection for patients, but it would actually hurt us. Will doctors choose to practice reproductive medicine in a state where disclosure of a patient’s name could lead to a prison sentence? We don’t think so. We are unaware of any other field of medicine where such criminal penalties loom over doctors’ heads. Why should that be the case for medicine dedicated to helping people have babies? Agencies who help locate donors and surrogates will similarly find it too expensive and burdensome to offer services in Kansas.

Finally, monitoring is itself a message. That which the Government tracks is “under suspicion.” Infertility patients do not exaggerate when they say the proposed governmental tracking of them and their children makes them feel like wrongdoers – an ironic result for people whose goal has been to have babies, a valuable social good.

SB 509 is profoundly anti-family. Why would Kansas want to pass laws that make it harder for women to become pregnant and couples to have families? Many of the listed disclosures involve egg donation. Would Kansas really want to discourage a treatment that is the standard of care for young women who survive cancer and now want to have a family?

IVF has been practiced worldwide for over 30 years. Thanks to this medical treatment, millions of wanted babies have been born to loving families. The Kansas legislature has offered no compelling reason to institute an invasive regime of tracking infertility patients and their treatments at this late date, and at the cost of interfering with medical treatments people need. We oppose SB 509 strenuously and urge our constituents to tell lawmakers to vote NO on SB 509.

If you live in Kansas, please send a letter to the Senate committee today.

What?!?! Let me get this straight, patients’ private medical information would be shared with newspapers? Gee, where I live the changes to HIPAA laws unnerved doctor’s offices to the point where they go beyond what is required by law. For example, I used to call to schedule my husband’s doctor’s appointments. No more. He does it himself because the resistance I got when HIPAA laws were beefed up was such that talking to my husband’s doctor’s office if they didn’t have a release form on file from him that this was OK became an issue. (So, I let him know that I wasn’t going to be his social secretary anymore and asked him to please schedule his own appointments). So, I can’t so much as call and schedule an appointment for my husband to see his doctor (due to privacy concerns) but Kansas residents under this bill who happen to have the misfortune of having infertility and seeking treatment for it will be subject to their intimate and private medical data being shared with the press?!?!

Will someone please help me understand how this is any one of the following?

(1) Consistent with privacy rules under HIPAA?

(2) Ethically/morally right in general? (i.e. Would it be OK for my GYN to release my medical records regarding my endometriosis treatment? Would it be OK for my cardiologist to release my medical records for my treatment at that center? How about the sleep disorder clinic that diagnosed my obstructive sleep apnea? Should they release my medical records regarding my sleep study?)

(3) How this is not an IMMENSE invasion of privacy for infertility patients?

(4) Why this is necessary to be done at all?

(5) How this is warranted in any way?

Now, lest you think that this post does not apply to you because you don’t live in Kansas and/or you are not an infertility patient, please think again.

If such invasive, profound, shocking violations of infertility patients’ privacy rights ANYWHERE can be taking hold, state by state, I ask again a question I have posed previously:

WHAT IS TO STOP LEGISLATORS FROM TAKING AWAY PATIENTS’ RIGHTS FROM OTHER PATIENT SUBGROUPS???

Lest you think, “I’m healthy and I can’t even remember the last time I ever saw a doctor… So, this doesn’t affect me”… PLEASE stop for a moment to think how quickly and easily that could change. Most healthy people like to think they are “invincible” to a certain degree… at least until they reach a certain age, for example.

ANYBODY at ANY AGE can find him or herself in the role of “patient” unexpectedly. An injury or sudden illness can foist the role of “patient” on a person more easily than one might think.

Most people don’t fully grasp this until they are personally impacted (either firsthand or watching a loved one suffer).

Having state legislators push bills through willy-nilly to suit their agendas while hurting patients and taking away their options is cruel and cold-hearted in my view.

Again, though, if infertility patients’ rights are so fragile as what we have been seeing in recent weeks, where does that put ALL patients’ rights? Where does that put EVERYONE’S rights? I include in that last group those who are pushing the legislation! I’m serious. Why can I see now that some state legislator out there is going to push these heinous bills through and then live to regret it, down the line, when someone they love (perhaps their child) finds himself or herself infertile? Or when he/she needs medical treatment for one of the yet-to-be-publicly-attacked patient categories? What about when these legislators seek treatment for conditions where the treatment options have been narrowed by their own legislation? When they suddenly are faced with the potential prospect of not having grandchildren, will they regret their part in outlawing infertility treatment options?

I must also highlight this portion of the bill:

“All information collected for the women’s health and embryo monitoring program database and any records maintained by the department, or by any entity contracting with the department, submitted to, maintained or stored as a part of the database, shall be retained in perpetuity”.

Well, it’s good to know up front that the state of Kansas plans to hold on to the personal medical information they obtain about patients for eternity! It’s reassuring to know that they are making this public knowledge right up front. Are they serious? Sadly, yes. They are quite serious.

Translation: If you are a Kansas resident who is infertile, has a loved one who is infertile, or simply cares about the rights of infertile patients in Kansas being stripped away by legislators who plan to “retain the information in perpetuity”, then by all means (please!) write, call, fax and protest in person regarding this legislation.

Again, just click below to directly access RESOLVE’s page regarding state legislation with regarding to infertility:

Before I wrap up this post regarding the Kansas infertility legislation, I wanted to include a link from the Phoenix New Times regarding the situation that has been brewing in Arizona.

(Photo credit – myonlinemaps.com)

Trigger alert: Before you click this news story link, please be forewarned that the article contains a picture that may be upsetting for infertile readers. (As my readers know, I myself do not ever post ultrasound pictures on my blog because I know they can be upsetting to those who are struggling with infertility and/or pregnancy loss). Please be aware that this newspaper used a picture they felt was appropriate for the topic at hand and there was no way for me to include the news story without the picture. I believe this story is important to mention in the context of this post:

Infertility Treatments Come Under Fire at the Arizona Legislature

How can you help? Here are some ideas. Help is urgently needed to get the word out about what is happening in various states. Legislation is moving so swiftly that people are finding about it after the fact in their home states… after the bills have already been pushed through part way. We need to get the word out more quickly so that the many people who would happily pitch in to defend infertility patients’ rights have the opportunity to do so before it’s too late.

So, again, how can you help be part of the solution to this complex puzzle with minimal time effort?

ACTION ITEMS:

1) If you are interested in helping spread the word about what’s happening or wish to contact legislators in one of the states currently in flux (you can email legislators in your own state but not legislators in other states, unfortunately), you may email the legislators by clicking the yellow blog badge above. IF YOU LIVE IN A STATE WITH LEGISLATION PENDING, PLEASE CONTACT YOUR LEGISLATOR AND URGE YOUR LOVED ONES/NEIGHBORS/FRIENDS TO DO THE SAME.

2) You may also post the yellow blog badge on your own site, if you have one. If so, please have it link to the site that the badge above routes you to.

3) If you do not have a blog and do not live in one of the states affected so far (more are being added all the time), there are still things you can do to stand up for the rights of infertility patients and to spread awareness about what’s happening.

a) If you use a social media site like Facebook or Twitter, please consider posting the RESOLVE link on your Facebook wall, in a tweet/retweet, in Facebook direct messages to people who might be willing to spread the word, etc.

b) Emailing friends and family who might be willing to help spread the word is another option.

c) Word of mouth can be a powerful thing because often people will pitch in when a loved one or trusted friend is making the request.

If you are just learning about the topic of anti-family legislation being hastily pushed through at the state level in multiple states, feel free to check out the previous posts I have written on this subject…

Related links:

Legislation that threatens the rights of infertility patients:

HERE, HERE, HERE, HERE, HERE, and HERE

With cooperation, we can make a difference!

Patients’ rights postscript:

This has nothing to do with infertility patients’ rights and everything to do with patients’ rights being stripped. Imagine you and your loved ones have put a great deal of thought and energy into your end of life wishes and have consulted an attorney to draw up a living will. Well, if you live in Idaho… you have wasted your time because it is now not worth the paper it’s written on. You may as well burn your living will in the trash. What am I talking about?

Check out this story from PR Newswire.com:

Idaho House Committee Says “Conscience” Trumps Patients’ Rights

From the above article:

“This legislation tells Idahoans that as patients, they don’t matter — their living wills, advance directives or other instructions for end of life care are now set to be subject to someone else’s conscience,” said Jim Wordelman. “AARP commends Representative Higgins for taking a stand for older Idahoans; it’s unfortunate her attempt to put patient’s needs and wishes first in Idaho fell on deaf ears.”

Folks, patients’ right are under assault on everything from infertile patients’ rights to receive medical treatment for infertility to patients’ rights to execute their living wills. Patients’ rights are under assault in multiple states. Just because you may live in a state not yet affected does not mean your state might not be next. Please, stand up for your rights and the rights of those around you. History can be a teacher. Please stay informed about what’s happening in your state because what has occurred in other states could just as easily happen in your state next. Thank you!

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


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Reading: Kansas Is Killing Me

11 comments

1 EndochickNo Gravatar { 03.13.10 at 5:05 pm }

Let me address those questions you posted:
(1) Consistent with privacy rules under HIPAA?

No, this is extremely contrary to HIPAA. It’s blacklisting! Instead of protecting your privacy, you’re being “outed” for seeking treatment. And it is treatment. Infertility, regardless if it’s related to disease process (as in endometriosis) or a solitary diagnosis, is a disease that deserves respect and the ability to be treated.

(2) Ethically/morally right in general?
This is in no way ethical or moral. It’s government over stepping their boundaries.

(3) How this is not an IMMENSE invasion of privacy for infertility patients?

It is an IMMENSE invasion of privacy for infertility patients! And it opens the flood gates for privacy invasion legislation for other diseases, as well! It’s scary. This legislation passing in any state shows the degrading path our government is on.

For now, they are limiting infertility patients. Next, who knows what disease they go after. Once they find out how much money limiting these patients’ access saves, we’ll begin to see legislation effecting other illnesses and diseases.

(4) Why this is necessary to be done at all?
I gather it’s to ward off any more of the Jon & Kate Plus 8’s and that lady with all the kids (her name and the number are seriously escaping me right now!). But normally infertility treatment produces an average family size and nothing more.

(5) How this is warranted in any way?
It’s not warranted. Period.
.-= Endochick´s last blog ..What a difference physical therapy makes =-.

2 AllisonNo Gravatar { 03.13.10 at 8:02 pm }

I agree that we have the Octomom incident to thank for a good bit of this legislation. Wonder how I can THANK her?!?! ERRRR!!!
.-= Allison´s last blog ..I’ve been a bad blogger =-.

3 Diana LeeNo Gravatar { 03.13.10 at 8:10 pm }

Thank you for writing about this issue. I’m a Kansan and have contacted all the legislators on that committee. I actually know a number of them as I used to work for the Kansas Legislature, and I believe they are likely to do the right thing here. I hope so, anyway.

4 Kelly DNo Gravatar { 03.14.10 at 12:29 am }

It is scary. There is speculation that the legislation in KS, AZ and other states, is a national concerted effort. They are well funded and have immense power in these Republican heavy states. Hopefully we can stop them now, and keep fighting as they are going to keep trying in other states and/or next year.
.-= Kelly D´s last blog ..Walk of Hope =-.

5 JeanneNo Gravatar { 03.14.10 at 2:55 am }

Endochick:

Yes, I kind of figured you would agree with my line of thinking on that set of questions. While my questions were more or less rhetorical, you reinforced many of the points I was trying to get across.

While situations like those you referenced in #4 certainly (!) don’t make life any easier for infertility patients, I will refrain from using Octomom’s real name because I swore to myself when her story first broke that I wasn’t going to blog about her. I’ve kept my promise to myself this long. So, I’m not going to so much as type her name now. (I’ll send you a note with her name separately so it doesn’t nag at you). I just refuse to give her any “air time” because her situation has hurt so many people and I don’t want to focus any more attention on it.

Despite some very deceiving appearances (i.e. the way IVF is portrayed in the media – such as the cases you named), situations like those are rare. In fact, according to the American Society for Reproductive Medicine: Triplet and Higher Order Multiple Births from ART Are Below Two Percent.

Sadly, since the media focuses SO much time and attention on rare cases like those you referenced, the public is often left with the mis-impression that IVF rates are higher than they are. I’m no statistician but based on my understanding of what IVF success rates typically are, it would appear that family size is generally smaller than average for those who pursue IVF treatment.

Per RESOLVE, “currently only 15 states require insurance coverage for infertility treatment, and laws vary widely”. Considering how very expensive IVF is and the odds of it taking multiple rounds to achieve a live birth at all… and in light of the fact that the cases you referenced are rare (and not the norm!), I believe society in general has a skewed perception about what typical family size is for those who pursue IVF treatment.

Allison:

In regard to the woman you mentioned, I certainly don’t think that case helped make life easier for infertility patients one bit (!) and it may well have helped pave the way for people to begin formulating excuses for the introduction of bills like what we’re seeing in multiple states now. (Of course, piling on new legislation – when from what I understand/by all accounts her doctor allegedly violated existing protocol doesn’t seem to be the answer for even cases like that).

While her situation most certainly resulted in some downright ridiculous media coverage and while it may have helped get the ball rolling as far as planting the idea in some people’s heads about making changes to existing legislation for assisted reproductive technology, I have read the legislation in the various states that currently have anti-family legislation being voted on at the state level and I can honestly tell you that I see other motives behind what’s happening. I am not suggesting that the media circus related to that woman who you mentioned has been helpful by any means. However, I believe there are other factors at play.

Diana:

THANK YOU for contacting the Kansas legislators!! I really hope they do the right thing. I appreciate you getting the word out! Please keep me posted!! 😉

Kelly:

It really is scary. There is not a hint of a shadow of a doubt in my mind that this is a national, concerted effort. Too much has happened too quickly for that not to be the case.

The situation in Arizona mentioned in the article hyperlinked in this post that said, “the Senate and the House were hearing the same bills in committee at the very same time. (That’s practically unheard of, Capitol watchers tell me). The physicians were forced to choose which committee to attend”… That right there is a perfect example of this being well-coordinated.

As far as future infertility legislation is concerned, if the rate at which states have been moving thus far is any indication, it will take a relatively short time for the hands of time to be turned backward (in a good-sized portion of this country) for infertility treatment options… unless large numbers of people start speaking up!

Since people have to be aware that legislation is being introduced in their state to be able to speak up, it becomes difficult for very many people to speak up in the very narrow window of time that is generally available before legislation moves on.

From the time that RESOLVE (which is staying right on top of all the states) updates its website about the latest state to introduce legislation… to the time that the legislation is expected to be voted on can be as little as two days!!

It is incredibly difficult to coordinate a response and get the word out to a sufficient number of people in just two days’ time. So, at the risk of sounding incredibly pessimistic… I’m not entirely sure “next year” is even the realistic timetable. 🙁 It’s only March now. With 50 states, several of which have already gotten the ball rolling on anti-family legislation… I am deeply concerned about just how much ground could be covered in the near future by those who are introducing, promoting, and voting for these anti-family bills. “Next year” sounds far off and somewhat less threatening than what I am envisioning based on what has happened just in the last few weeks. I don’t mean to sound like a pessimist. I do hope people reading this will speak up immediately.

I had a conversation with a young woman today. She’s in her 20s and she has endometriosis. Due to the nature of her condition now, she is figuring that she and her boyfriend will marry and want to have children in the next few years and she thinks they’ll be using IVF. She had not yet read my blog posts about this issue. I suggested that she might want to read up on what is happening in various states now regarding infertility treatment and shared my concern that at the rate things are going, IVF may be outlawed. She expressed disbelief that this could happen… saying something like, “that can’t happen”! (My response was something like, “like hell it can’t”! I then send her a couple of links to back up why I have these concerns. She then saw where I was coming from.

It concerns me that there are a great number of infertility patients or patients who may well find themselves infertile when they get ready to try to conceive who are unaware of the current situation. I think if more people were aware of how dire the situation is NOW, they would be speaking up to the state legislatures with their objections to the anti-family legislation that is getting introduced in state after state after state. I also believe they’d be posting on social media sites like Facebook and Twitter. Also, emailing friends/relatives and asking for their support can be a big help. We need as many people speaking up as possible!

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Finally, I would greatly appreciate any sharing of this post. There is a Stumble It button and a Tweet This button at the end of the post. Those on Twitter can ask people to retweet it. Facebook users, I’d be thrilled if you’d post this blog post as a link on your wall and encourage your Facebook friends to read and share it. This post links back to all of my other infertility legislation posts. By linking this post, you are sharing it but also all of the previous related links within it.
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Thank you!!!

Jeanne

6 Diana LeeNo Gravatar { 03.14.10 at 6:17 pm }

Got a reply from Senator Schmidt that she agrees with us and is opposed to the legislation. Yay!
.-= Diana Lee´s last blog ..Tournament Time Helps My Sad Sack Guilt =-.

7 JeanneNo Gravatar { 03.14.10 at 6:30 pm }

Diana,

That’s great news!! Thanks for letting me know!! 🙂

Jeanne

8 AmberNo Gravatar { 03.14.10 at 7:07 pm }

This is complete speculation, but I think they’re using infertility patients as a precedent to government regulation and monitoring of abortion. In the political arena, infertility treatment is relatively benign compared to the continuously heated abortion debate.

9 JeanneNo Gravatar { 03.14.10 at 7:49 pm }

Amber,

This issue was actually touched on by doctors interviewed for the article linked in this post from the Phoenix New Times:

Infertility Treatments Come Under Fire at the Arizona Legislature

Jeanne

10 Diana LeeNo Gravatar { 03.16.10 at 5:30 am }

I totally agree with you, Amber. It’s thinly veiled, at best.

11 JeanneNo Gravatar { 03.16.10 at 12:42 pm }

Diana,

Infertility patients go through total hell and it really pains me to see treatment options taken away from them.

Jeanne

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