There Must Be a Better Way
I interrupt my usually scheduled program of grumbling sarcasm — brought to you while I attempt to climb Maslow's hierarchy of needs in the wake of infertility — to bring you some random thoughts under the rubric of there must be a better way.
A few months ago Mel helped spearhead an awareness-building effort called 12 and a Half Fighting Back to highlight the financial impact of infertility. On behalf of my infertile sorority I participated and contacted my Congressional Representatives asking for better insurance coverage. Of the four offices I contacted only one, Senator Feinstein's, actually seemed to read my request. The staffer who responded clearly didn't "get" that I was a woman since it came back addressed "Mr.", but still I give her office points for trying. Here's the response I received:
Thank you for contacting me regarding health insurance coverage of infertility treatments. I appreciate the time you took to write and welcome the opportunity to respond. I am concerned that the problem of infertility affects so many people across the country. Since coming to the Senate, I have strongly supported funding for biomedical research at the National Institutes of Health, Centers for Disease Control and Prevention, and other health agencies. I believe these efforts hold tremendous promise to produce new treatments and possible cures for a myriad of conditions and diseases, including infertility.
On June 27, 2007, Representative Anthony D. Weiner (D-NY) introduced the "Family Building Act of 2007" (H.R. 2892). This legislation would require all companies that offer group health plans that provide coverage for obstetrical services to cover infertility treatment. The "Family Building Act of 2007" is currently before the House Committees on Energy and Commerce; Education and Labor; Oversight and Government Reform; and Armed Services for consideration. While no companion legislation has been introduced in the Senate at this time, I will keep your comments in mind should the Senate consider this issue in the future.
The other politicians who didn't so much as respond — only one other sent a form letter acknowledging receipt of my correspondence — well, just wait for re-election time ...
The U.S.' lack of priority concerning infertility was magnified recently as I read a profile on the new head of the UK's Human Fertilisation and Embryology Authority. Yes, the UK actually has an agency dedicated to looking at ways to treat infertility, and it's headed by a woman — a novel idea on both scores wouldn't you say? Among other experiences that will inform her approach to the job, she has battled cancer. She's quoted as saying, “Infertile women spend most of their days reading about infertility. Women with breast cancer spend most of their days reading about breast cancer. No one becomes more expert than the patient. My own experience of catastrophic illness is similar to that of infertile women. It’s as if the end of the world has arrived.” Amen, sister.
She goes on to say that she wants to rediscover the public face of the agency because "if it has a human face, then it’s much clearer that the authority’s decision-making is like everyone else’s decision-making – human.”
Ah, if only we could reach such enlightenment and interest in the U.S. How many couples — good, solid, tax-paying responsible people — wouldn't be left trying to decide if they can afford the thousands of dollars ($15,000+ for one IVF cycle) needed to seek treatment amid the already difficult emotional chaos wrought by infertility?
Now along these lines, please hop on over to visit Kelly at Twin Peas Blog. She has some questions for couples who have undergone infertility treatment (anonymous submissions welcome). She's gathering data about insurance as part an initiative to lobby for better coverage.
I'll return later this week with more satire because that's proven to be my latest best way of getting the upper hand against infertility and its weirdness in our less than evolved society. I think Maslow might have a thing or two to say about that...
Hi there,
I can't get to the Twin Peas blog, the link takes me to the needs page.
Good post.
Oops. Technical glitch fixed now. Here's the direct link: http://twinpeas.com/wordpress/infertility/insurance-and-infertility/25/
Does the legislation address women denied for private insurance because of seeking infertility treatment? That is my story. I can't get insurance at all. I am guessing this legislation is all about group plans.
As a Canadian, it isn't less of a problem here. We make a pretty good living compared to most people, and my actor's insurance covered our first round of IVF drugs but not the procedure itself. Unfortunately, I exceeded my lifetime limit fairly quickly and good ole Visa had to be used quite a bit. Our meager savings for a home went. And yet we supposedly have free health care. Well, infertility is not cosmetic, it's medical, so I could never understand how our province couldn't at least cover one procedure. I didn't undergo those procedures and take those drugs because I had nothing better to do. You're right, it's not fair.
ah, the enlightened brits. amen sister, is right. can you imagine our health policy being guided with such intelligence, experience and empathy? I'm afraid to say I cannot.
it's astounding to me that your other elected reps didn't even reply, boxer especially. how aggravating.
and yes, I remember maslow's triangle from a college psych class. not sure if I'll ever make my way to the top...
~luna
Here in Britain, we have national health insurance and everyone is covered, all treatment is free on the point of delivery. So here I am doing monitored clomid cycles and the only thing I'm paying for at all is a small fee for prescription charges. Sounds great. Is, in fact great for nearly everything. We all get a chance, even if it's a rubbish chance.
On the other hand, infertility treatment is seen as a luxury treatment, and is heavily rationed. Take IVF proper. The extremely long waiting lists, and the extreme busyness of NHS clinics, means you are just meat on a conveyor belt, and once you've had your one (1! ONE!) chance, even if it fails or is canceled or you respond poorly, tough. You have to then go away, start all over again somewhere private, and pay out of pocket to do it, or give up.
It is certainly fairer over all, as your financial situation won't stop you getting treatment. On the whole, I wouldn't swap it for the American system on any account.
But I could do with an RE who gave a crap, and who read my notes once in a while. And I could do with not feeling that I am completely at the mercy of national budgets and public opinion, as whenever there's a funding shortage, 'luxury' treatments are the first to get cut.
I wish you had done better than me, but I guess we are in the same boat. I've received a form letter for my efforts which invited me to learn more about my legislators health care and social security reform concerns... huh???
Reading your experiences in your country I for that reason feel really lucky to live in Slovenia. The basic health insurance covers 4 IUI and 4 IVF treatments (including drugs) and currently 6 fully insurance covered IVF treatments are about to be legislated.
Of course there's still much to be improved, but I am really grateful to have the opportunity to spend money on other things and not treatments.
I wouldn't swap it for American system either (as May has put it) as the price of self payed treatment is much lower than in USA... as for example IVF costs appr 3000 EUR (drugs included).
Just for comparison...
Thank you, Freya, for sharing how infertility treatments are handled in your country. It seems to me that it should be in any country's best interest to help their tax-paying citizens on their way to creating more tax-paying citizens. I have yet to come across any infertile couple who didn't have a keen interest in being responsible parents.
Thanks for the link; I took the survey. This subject is near and dear to my heart, as two of my friends here in Missouri are having to pay out of pocket for diagnosis, and D.'s insurance plan just changed again, not at all in favor of infertility coverage. (Yes, it can get worse than $0, by changing networks to one that physicians dislike.)
Colour me cynical, but I'm pleasantly surprised that any of em wrote back at all...
J
I feel I should correct your statement about the UK's Human Fertilisation and Embryology Authority. It isn't dedicated to looking at ways to treat infertility (as far as I know). It's the watchdog organisation that monitors clinics and ensures that ethical and medical standards are being met. It also has the role of advising government on new scientific advances and how these should be covered by legislation. A very difficult job.
But as May has commented, the NHS does ensure that there is at least some treatment for all, regardless of ability to pay. One cycle of IVF is not enough in lots of cases (most?), and so a huge number of people have to fund their own treatment after that, but it is, as May says, better than nothing. And apart from IVF, investigative procedures, corrective surgeries and drug treatments are available on the NHS, so I guess it's a better deal overall. I think it is better, too, not to have a lingering suspicion that your infertility is funding someone else's nice lifestyle (you have blogged in the past about med students picking infertility medicine as a good career option for financial reasons).
Thanks for the clarification...I'm all for accuracy in reporting of any kind. Related to the NHS, I have to wonder if -- sometime in my lifetime -- universal health care were to ever move forward in the U.S. how it is infertility treatment would be managed.
I did email three of the local state representatives in my area and I actually got a personal call from the one guy. Ok, he left it on my answering machine, but he did respond and told me he voted for the changes. Hmmm, I believe the literature I received in the mail from him at the last election said he had an adopted child. How about that.
In the UK, the NHS offers a mainly free-to-all health system. Sounds good, no? Yes it does, except many local health authorities have decided they won't fund IVF. Those that do usually have waiting lists of several years, strict acceptance criteria and offer one try only. So very many Brits end up paying for the treatments themselves, and those who can't afford it go without. Great!
The financial consequence of IF are chilling, and I only wonder how many people have to throw their hands in the air and give up before trying because of the cost. Tax day is coming up and I mentioned that I paid upwards of $30,000 for a "medical treatment" that wasn't covered by insurance. My preparer is going to claim it all...I just wanted to make sure that others do the same. The treatments, meds and even acupuncture on on the list of allowable claims on the IRS website. I should get a little cash back, better than nothing.
Another Canadian perspective - as I recall all our diagnostic tests were covered by public health care, and the medications for IUI's were covered but through the benefits plan at work. I think the benefits plan would have covered up to 3 IVF's through me and my DH had something through his plan - but I believe that actual IF procedures are only covered by public health care in certain cases, ie. both fallopian tubes blocked. My impression is that the procedures are not as costly here as in the US, but I don't have data to back that up so I'm not sure how accurate that is. We did have about 5 months wait to get in to see our RE, though once we were in things moved along quickly.
I do know people who have sold their homes and drained their savings to do IVFs, so it is still a heavy financial burden here, despite the generally good public health care we have.
I too am a Canadian and I've had extensive testing, lap surgery, different procedures and all my dr. appointments and medical procedures, blood work etc.. were all covered. Which I was grateful for and I had a good extended health plan that covered 100% of my drugs and still is which has helped a lot as well as my acupuncture up to a certain amount annually. But the procedure itself was not covered and I had to pay out of pocket but compared to some US patients, I found it much more affordable. I have friends down there who went through an IVF and had to pay almost four times as much. I've gone through extensive amounts of fertility treatments and feel lucky that we made decent enough money that we didn't have to go into huge debt for it. I was also blessed as my family helped us out a bit.. and some of the money did come back through my taxes. I got I think about 17% back of what I paid. So that helped a lot and we didn't suffer finally too much. I think we are one of the lucky ones and I'm so grateful. BUT I often thought about the women who don't have extended health coverage or didn't have a good income, what happens to them? And when I heard how much it costs in the US for some who don't have insurance or they have to take out a 2nd mortgage, I really felt for many of them. It just breaks my heart and I wish everyone had more extensive coverage.
I need to add my bit on the UK's NHS system in relation to IVF.
As Iota says, the HFEA is a regulatory body, but one that seems to get it entirely wrong.
Whilst it's true that everyone SHOULD be entitled to one free cycle, that varies according to where in the country you live. Not just which county, but down to which post (zip) code within that county. The government body that make the recommendations for treatment actually say we all should get three free goes.
I was, when diagnosed, entitled to 3 cycles. I was 37, but they told me i'd be lucky to get one cycle in before I was 40 - and no longer entitled.
Sure enough, my free cycle came up this month - 9 months before my 40th birthday, nearly 2 years after our diagnosis. Not keen to wait, we had paid for our 5 cycles (approx $60k) in the meantime.
I think you genuinely get 3 free goes in the Netherlands and Israel.
You've tapped into into a really interesting topic - i enjoyed reading other people's experiences. Thank you. Sorry for the rant!!
Interesting discussion! I also just wanted to follow others who've commented on the situation in the UK.
As has already been said, the HFEA regulates clinics and ensures that ethical and medical standards are being met. Its main role, however, seems to be to regulate scientific research involving human embryos - i.e. it is not an organisation which is dedicated to working to develop new ways of treating infertility.
Access to NHS-funded treatment is, furthermore, completely dependent on where in the country you live - what is known as the 'postcode lottery'. We were on a waiting list for IVF for over two years, before being told that our local Primary Care Trust had run out of money and would not be funding any fertility treatment whatsoever. Although we do have private health insurance, they do not cover assisted conception treatments of any description, so we are now in the position of having to fund our treatment ourselves.
Unfortunately the Brits are not as enlightened as it may first seem!
Another European view - Portugal:
You only can ask for a public infertility appointment 2 years after starting ttc, even if you now before that something is not wright; I ask for an appointment in July, and I'm going to have it in next April, 10 and half months later. After the first appointment, you have to do all the tests (this could take more than 1 year), and when you have the diagnostic, you go to the waiting list, about 2 years for IVF. So if you start ttc with 29, as I do, you only get IVF at 35. Depending of the hospital, you can get 2 to unlimited treatments, to the age of 38. You still have to pay for meds (about 1000 euros for IVF, more than twice the minimum income, almost my income in a highly qualified position, with a MSc). The insurance do not cover at all private infertility treatments, they are considered beauty treatments. In private clinics, an IVF cycle is about 5000 euros. An IUI cycle is about 1000 euros, plus meds. I am thinking in going to live to Slovakia...