Who Should Be Able to Access Infertility Treatment?What Does Affordable Mean?

I wrote last week about the cost of infertility treatment and even used the word elitist, which ticked some people off. Very shortly afterwards, I got into a spirited conversation with two of my closest friends about the political, emotional, financial in’s and out’s of infertility coverage in the United States. I was taken aback, frankly, listening to their points of view, and realizing that it was probably representative of the general public.

What I heard is that people without health insurance (that covers treatment), without a state mandate or without substantial financial resources, in essence, are out of luck, as far as they were concerned, about creating their families.

So my mind started jumping around about this and I started looking up information. Here are a few things that I found out.

About insurance, coverage and experimental treatment:

In the past, insurance carriers that do not have exclusions have denied claims for one of the following three reasons: 

1.      Infertility is not an illness;

2.      Treatment of infertility is not medically necessary;

3.      Treatment of infertility is experimental. 

These are invalid reasons to deny your claim. Infertility is an illness (2). Medically necessary is usually defined by insurance policies as medically required and medically appropriate for diagnosis and treatment of an illness or injury under professionally recognized standards of health care. Treatments such as GIFT, IVF, ZIFT/PROST have NOT been on the American Medical Association's experimental list since the late 1980s.

Interesting information above, given that GIFT, ZIFT/PROST have not been options that have been used in infertility treatment for many, many years. This is information from INCIID, (InterNational Council on Infertility Information Dissemination, Inc.) a well respected patient advocacy organization, included in a paper written several years ago. The three reasons cited for non coverage are as true today as they were when this paper is written.

Many roads, in the early 2000’s led to the ADA (Americans with Disabilities ACT). It was felt that if infertility was recognized as a disease that it would be more compelling to have insurance covering it. While that has worked to a certain extant, has the ADA ruling been more helpful in creating state mandates? Currently we have 14 states with state mandated coverage.

From ASRM (American Society for Reproductive Medicine)in their area of patient information. A simple definition of infertility:

Infertility is NOT an inconvenience; it is a disease of the reproductive system that impairs the body's ability to perform the basic function of reproduction.

Under ADA, reproduction has been held by the US Supreme Court to be a major life activity. (In fact, no less important than learning or working.) More about whether or not infertility is considered a disease:

The U. S. Supreme Court held in 1998 that infertility is a disability under the Americans with Disabilities Act (ADA). But the Court subsequently held that a person is not considered disabled under the act if the disability can be overcome by mitigating or corrective measures. And a lower court held in 2000 that, while infertility is a disability, an employer’s health plan that excludes treatment for it is not discriminatory under ADA if it applies to all employees.

It seems to me that infertility is considered a disease, but a somewhat special disease in that treatment is considered optional, or even a life style choice as reported in Newsweek.

Here’s how the article begins:

When doctors at a local St. Louis clinic told Marcie Campbell it would cost more than $15,000 to try to get her pregnant, she was crushed. For somebody with polycystic ovary syndrome, coupled with blocked fallopian tubes, in vitro fertilization was the best option to conceive a child. But with a household income of $47,000 a year, it was hardly an option. (Missouri isn’t one of the 15 states that mandate insurance coverage for IVF.)

“I told them, ‘There’s no way.’ We can’t afford it. Maybe rich folks can,” says Campbell, 33.

It takes me back full circle to the conversation with my friends. Is infertility treatment elitist? Interesting to me that this article reports that this couple was able to afford treatment for $7,500, not $15,000; we all know that some prospective parents, in this economy can’t afford that either.

We don’t dictate to couples without fertility problems how much money they have to have, how far up the corporate ladder they have risen before they start their family. Without infertility, when and how you start a family is entirely within your own discretion and that decision is made in the privacy of your own home. Is someone making minimum wage less able to raise a child? Less able to be a loving parent?

The article continues, pointing out the significant differences between insurance and affordable Infertility treatment here in the US and in Europe.

Whether infertility should be classified as a disease or a socially constructed need is a dilemma at the center of this debate. While most other developed countries consider infertility a medical condition and insurance policies often cover the costs of IVF, health insurers in the U.S. typically don’t think “wanting a child” is a medical necessity.

We don’t value our children less in this country. So what is it? And better yet, going forward, what can we do to ensure that infertility treatment is either covered by insurance, a state mandate, or health care reform?

What can we do to make this a reality?

 

 

 

Egg Donation, Infertility and Sharon LaMothe-Conversation Continues

 As As promised, we are continuing the conversation about egg donation and infertility today, with Sharon LaMothe. Sharon has a unique perspective into this issue as her bio clearly shows.

Sharon LaMothe has been in the Infertility Industry since 1998 when she signed her first Gestational Surrogacy contract. She subsequently gave birth to twin girls and in 2000 was invited to join a FL law firm recruiting and managing surrogacy arrangements. Sharon then co-owned and operated Surrogacy Consultants of Florida, LLC, the first successful independent surrogacy agency in Florida.

Sharon LaMothe is currently the owner of Infertility Answers, Inc. ,the Creator of Surrogacy 101 (the blogs), and The Third Party Blogspot, as well as writes for The Business of A.R.T.

Lisa,

You bring up some very good points and each and every one has been debated back and forth between the religious, the feminists, right to life and pro choice groups. I personally don't see the Intended Parents saying what THEY need or want regarding the monetary value of said donation. Is there an Intended Parent group out there who has joined hands and said that they will NOT pay more then X for 'donated' eggs? Or is there a group of Egg Donors who have stated that they will not except less then Y for their 'donation'? I haven't heard of one.

What I have found, when money is involved, whether it be for egg donation or surrogacy, that there is the cogitation that 'women are being paid' for the use of their body or body parts and that instantly means that they are being exploited. Here in America, I say not true! Women accepted into these donor programs and clinics, especially those being offered more then the average amount, are intelligent, educated and, for the most part, well informed. Especially if they are being matched through an agency that is well equipped to answer all the questions that a donor may have and then offer information that the donor may not have thought about. Education is key as is communication. Remember, here in the states we have protocol and almost every clinic I know of follows pretty much the same procedure when it comes to qualifying a donor to cycle with one of their patients. This includes a psychological evaluation. Now having said that, I am well aware that not all clinics require a mental health professional to meet with their donors but most do and I am certainly an advocate for evaluating both egg donors and surrogates, not only to be sure that they are well informed of the process and mentally/emotionally stable but the elevation offers another professional prospective and I find it very hard to believe that if ANY mental health professional thought that an donor or surrogate were being exploited that they wouldn't pull the plug right then and there and let everyone involved know about it.

Which brings me back to money. Realizing that the ASRM has set guidelines for payment for donors and not surrogates/carriers says something to me. That somewhere, someone thinks that egg donors are too young and incompetent to think for themselves but surrogates/carriers, because they have to be mothers to their own child in order to carry a baby for someone else first, must, therefore, be mature and competent. You never really hear of any controversy regarding what a Gestational Carrier receives regarding compensation. (I know of experienced GC's signing contracts for 50K+. Now I will step out on the slippery slop with you, Lisa) Although if I owned a donor agency I would follow the ASRM guidelines for compensation mainly because the entire field is unregulated and it's nice to have some sort of meeting of the minds, I don't think there is a need for a cap in compensation nor do I feel that women who get paid for donation is a bad thing. Intended Parents/Recipients want and need eggs, young women often have college loans, car payments and the like and some already have a family and want to support their own children. I look at most of these scenarios as Families helping Families...Women helping Women...however you want to phrase it and there is nothing wrong with that. If an egg donor is asking for 'too much money' for her donation then she will not attract recipients that find her request out of their budget. It's really quite simple. To be clear, I do believe that it is the process of the donation (medications, appointments, pain, retrieval and recovery) and not the eggs, however, that a donor should be compensated for. Just as a Surrogate or Carrier is not paid for the baby, a donor should not be paid for the eggs.

Sharon LaMothe

Thanks Sharon, for weighing in on the subject. It's a real pleasure to have someone with your experience discussing some of the issues that are important around this subject.

 Next week, the conversation will continue with one of our RMACT team members who has been working in the field for many years. That part of the conversation will be from the point of view of the parents who are receiving donated eggs. If you are a parent through egg donation and would like to add your comments and thoughts, we would love to have you. If you would like to discuss your experience anonymously, please let me know. If you leave a comment on this blog, it will come directly to me and I will not post anything without express approval from you, the writer.

Tomorrow, Saturday, Fertile Yoga in both Norwalk and Brookfield! Fertility Summer Seminar Series continue next week as well.

 

Egg donation questions-places to find answers you can trust, from experts in the field

  Egg donation is my theme for this week. I have to admit that it's not a subject that I know a tremendous amount about, at least personally. Yesterday we posted a lot of information specific to Reproductive Medicine Associates of CT. Today I thought I would go for a little history and places to find reliable research on the subject.

Here are the articles and resources that I uncovered that I know we can trust. First up is from a highly respected reproductive endocrinologist writing for RESOLVE. In case you are not familiar with RESOLVE, their full name is RESOLVE: The National Infertility Association. Founded by Barbara Eck Menning in 1974 to serve as a place where men and women could find information, support, and education as well as an organization designed to raise public awareness and encourage and oversee advocacy efforts. The article that is published on the RESOLVE website talks about the general history of egg donation as well as who the technology is truly designed for.

Moving onto an area that needs to be considered by prospective parents, we come to disclosure. Disclosure is a decision that one does not come to lightly; as a prospective parent, one needs to weigh the benefits and possible drawbacks for the child. Considering the child is where the process begins as it is his or her personal and medical history. There are many wonderful, helpful articles and books out there discussing this piece of egg donation.  One paper, created and published by ASRM is available by clicking here.

Another article that I found clear, with great step by step information for egg donation and other informative, well researched information is available through a site that focuses on pregnancy, but has a very valuable, helpful and well rounded section on infertility. If being on website that also talks about pregnancy could upset you, then this is not an article that you need to look at. However the click through will bring you straight to the article on egg donation.

Moving onto books, one of my favorites is by Ellen Sarasohn Glazer and Evelina Weidman Sterling, published by Perspectives Press, called "Having Your Baby through Egg Donation". This book goes past the basic and moves into the depth that this subject really needs. Written thoughtfully, while addressing the legal, ethical, religious and economic issues that are involved in egg donation, clearly a well researched  book on all the various levels.

Another great find on the internet has been published as a Google book, although still in print and available through bookstores and Amazon,  written by Machelle Seibel and Susan Crockin, JD, titled "Family Building through Egg and Sperm Donation: Medical, Legal and Ethical Issues". Machelle Seibel has been in the field of infertility for decades, writing, researching, and publishing and at one point editing an ASRM magazine. Susan Crockin is an attorney in Massachusetts who struggled with her own infertility and went on to become instrumental in passing one of the most comprehensive  and the oldest state mandate in the United States. I was thrilled to find the book online and hope that you either take a look at it or remember it for future reading. The book covers all the major aspects of egg donation and may be a place to look for certain answers.

Veering onto a slightly different path, to a wonderful group called Fertile Hope; you can find information about egg donation and freezing when cancer is the driving force behind your diagnosis. While this may only pertain to a few of you, I felt it important to include. Fertile Hope, founded by Lindsay Nohr Beck, a cancer survivor who struggled and successfully became a mother, is a national non-profit organization dedicated to educating and support men and women going through cancer during their reproductive years. Preserving fertility is the main educational message behind Fertile Hope and within the last few years, the relationship between Fertile Hope and Livestrong (Lance Armstrong's not for profit organization) became a formal one, with the two organizations supporting one another in their fertility preservation message.

I hope that if you are considering egg donation that these resources help you. Certainly, good, reliable information that you can trust will save you time when searching the internet. After over 20 years in the field of infertility, knowing what to look for and steering you away from sites that are purely commercial in nature was truly the point of this blog. It was interesting to me see how much information is on the internet that would not prove to be helpful or supportive when looking at this sensitive topic. If there are sources that you have found that are helpful, please share them with us, as this blog mentions but a few very good resources.

I enjoyed looking through and seeing how much egg donation has evolved into a technology that is truly a viable option when we are trying to conceive. The amount of time, research, and energy that has been expended on this subject is comforting. Please let me know if there is more specific information that you would like to see.

We're here to help.

 

 

Trustworthy infertility websites- SART, ASRM are two you can trust

  How do you know when you are looking at a website to get accurate, reliable, well documented infertility and egg donation information, that this is what is being delivered? It takes a while of going through the website, starting with "about us". "About us" is the first place I look when I visit any new website. I want to know if there is an agenda on the part of the author and I want to know what it is. I have learned the hard way that disclosure is not always all that apparent and a website may not always be what it seems.  Here are a few websites that I trust and often start with when researching infertility issues. I went looking to see what information there was out there, specifically regarding financial compensation for egg donation (oocyte donation). I am in no way suggesting that these are the only websites that can be trusted, however they are the two largest organizations of reproductive endocrinologists in the United States.

One of the first places to take a look is at the  American Society of Reproductive Medicine, (ASRM) website. This is what ASRM says about itself under the tab, "about us": http://www.asrm.org/mission.html
The Vision of the American Society for Reproductive Medicine (ASRM) is to be the nationally and internationally recognized leader for multidisciplinary information, education, advocacy and standards in the field of reproductive medicine. The ASRM is a non-profit organization whose members must demonstrate the high ethical principles of the medical profession, evince an interest in infertility, reproductive medicine and biology, and adhere to the objectives of the Society. 
If you have never looked at ASRM's website, now might be a good time. ASRM Ethics Committee Report on the Financial Compensation of Oocyte Donors is well written, thoughtful and has the brain power of many well respected leaders in the field of reproductive endocrinology. ASRM also has a series of well written, well researched patient fact sheets that are  worth taking a look at.

Another area of the ASRM website that I have found helpful is the index of professional groups of ASRM. There is a wealth of knowledge there and I find that the more I look, the more I find . A new find for me has been the mental health professional group's book reviews for patients. Love the reviews, they are thoughtful and professional, great combination.

A second website that you can take a look at, that is the Society of Assisted Reproductive Technology (SART) has this to say about itself:

SART is the primary organization of professionals dedicated to the practice of assisted reproductive technologies (ART) in the United States. ART includes the practice of In Vitro Fertilization (IVF). The mission of our organization is to set and help maintain the standards for ART in an effort to better serve our members and our patients.

One of the most important functions of our site is to help patients locate and contact infertility clinics and view national and individual clinic IVF success rates.

While SART doesn't speak specifically to financial compensation for egg donors, it has a good general section with an overview regarding donor oocyte. SART also is the most reliable, up to date place to get information about an infertility program or clinic. SART collects data, having worked closely with the Centers of Disease Control (CDC) in the past and then reports on the data which is available for patients to see. A good overview of what SART's purpose is available  and easily read. And having said that the SART reports on infertility programs are easy to read, I will now backtrack. They are easy to read, slightly harder to understand. When you compare fertility clinics, make sure you are comparing apples to apples, so to speak. The SART reports are a good place to get a very general idea of a infertility program, not the way to make a decision about a program. The reason being that there are lots of variables that the SART reports do not take into consideration when doing the reporting. More in the next few weeks concerning how to read the SART report in a way that will be most helpful to you.

Take a look at the websites, if you have any questions, any of the RMACT doctors will be glad to answer. So, ask away!