Last week I wrote that Advocacy Day was happening for Resolve. This week, I bring you notes from the field...er...Senate Building, not only to tell you about the work Resolve is doing to ensure that all Americans have adequate infertility coverage during this national discussion on health care reform, but also to entice you to join along next year when Advocacy Day rolls around again.
The day began with training and speakers. People sat with others from their state and received their meetings for the day. Each person met with the staff of two senators and two congresspeople--usually from your own state, but often, we met with lawmakers from other states if they did not have constituents present.
There were three things we wanted every lawmaker to hear:
1. We'd like their support on either House Bill 697 or Senate Bill 1258--also known as the Family Building Acts. These bills both state that insurance companies that offer obstetrical coverage must also offer infertility coverage. These bills will close the loopholes that current affect the states with mandated coverage and would bring coverage for the first time to the majority of states.
2. We wanted them to understand that infertility is a disease and needs to be included in the discussion on health care reform. It isn't enough to work only to bring minimal coverage to the uninsured. If we're talking true reform, we need to aim high and make sure that no one is under-insured.
3. We wanted them to approve funding to the CDC so they could create the National Action Plan on Public Health and Infertility. This line item is for a small amount of money, but it would make a huge difference for the CDC as well as the 7.3 million Americans diagnosed with infertility.
It was incredibly empowering to march through the halls of the Senate or House office buildings and speak with staffers about this issue close to my heart. It is one thing to discuss infertility with other infertile men and women. It is another to ask someone to make a difference for you.
At Advocacy Day 2008, Marisa, a Resolve member, spontaneously grabbed a piece of paper at Joe Lieberman's office and scrawled the words, "Help me have a baby!" She held the sign under his name plate and this image became such an emotional moment in the day, that this year, each group received a copy of the sign in order to replicate this image. It was incredibly moving to think about how it's not just a sign--for many of us with limited coverage, the cost of family building with infertility (either through treatments or adoption) is just too high.
Other bloggers also weighed in with their thoughts on the day:
The Long and Winding Road asked others to blog about Advocacy Day and tells her own story: "The fact that we are not allowed to be parents just because the cost of our treatments are so high is unconscionable. Please help us to reach our goals. Please help us to be able to meet our babies."
Cats with Passports writes: "I’m particularly bitter and disappointed that the federal government only provides two insurance options for employees overseas, neither of which covers fertility treatment. Give us more companies to choose from or give us more comprehensive health care through the two available."
My Nest, Someone Else's Eggs was part of my group and she wrote about the day: "I am going to Washington D.C. to participate in RESOLVE's Advocacy Day. I am not just doing this for myself as a distraction from the 2-week wait but also to help other infertility patients have greater access to insurance coverage. I am lucky to live in a state that mandates coverage but we still have a ways to go. "
How did you spend Advocacy Day and how did you reach out to help ensure that all people have sound health coverage for all medical diagnoses?
Melissa is the author of the infertility and pregnancy loss blog, Stirrup Queens and Sperm Palace Jesters. She keeps a categorized blogroll of 1800 infertility blogs and writes the daily Lost and Found and Connections Abound, a news source for the infertility blogosphere. Her infertility book, Navigating the Land of If, is currently on bookshelves (May, 2009). She is the keeper of the IComLeavWe (International Comment Leaving Week) list which is currently open for July.
Comments
Pragmatism Precludes This
Despite my own experiences, I find that I fall back on the lessons of American social history and realize that unless the bar is set to minimal coverage for transmissable diseases and linked to actuarial tables, we won't get anywhere. The reality is that for universal health care of any sort ot occur in the USA there must be items that are not part of the basic care - at least at first.
Unfortunately, reproductive health as a whole is so fraught with political and religious overtones inthe USA, bringing them into the debate will only delay any sort of universal care. It would be far better to encourage the private sector to compete on this one for now by taking the expense and risk of the most basic care from them. ROI is going to have to be the biggest single determinant to pass a universal health care plan. Infertility just does not have a high enough ROI for the first pass through and focusing on it will delay acceptance.
I know my view is unpopular in the IF community. I have worked in D.C. and know that a similar plan to what Obama is proposing was proposed as a shared risk plan among small business owners under the Reagan/Bush I regimes by joint Republican/Democrat groups to no success. Go for the low-hanging fruit first. Then we can talk about expanding coverage.
Pax,
MLO / Melissa
Hard truth
Dear Mel & all,
I had to comment on this (I created an account specifically for this). Unfortunately, as unpopular as my opinion will be in this community, I have to agree with MLO. I happen to work in healthcare and have seen patients or parents of patients struggle to afford the care they need, to ration their medicines to make them last longer, or put off care indefinitely due to cost. I am also infertile & have zero insurance coverage for treatments. I have spent sleepless nights wondering if I could ever afford to build a family and cursing how unfair that is, given that the government fully supports (for example) teenaged crack-whores having multiple babies. I get it. Oh how I get it.
The hard truth is, however, there are Americans (including children and infants) right now that lack access to very basic medical care and I find this unacceptable and shameful. Having insurance tied to employment is also a ludicrous system. Anyone can lose their job at any time, and be left in the lurch; and people often avoid changing jobs or careers due to concerns about healthcare benefits. Affordable health care for everyone DOES seem to me like a basic right that we should be supporting in this country. But any chance of passing universal care in this country needs to be somewhat cost effective---again, as MLO said, initially covering transmissable disease, cancer prevention, childhood screening, and other public health measures that are proven to save lives & money in the long run.
Special interests (yes, this is a special interest, though one near and dear to many of us) will only slow down or prevent real change. Say it works---the government decides that IF treatments need to be covered---who's going to step up next for their cause? I agree that IF is a disease, but there are many others that believe their afflictions are, too. How long will this take, and will it eventually get so bogged down that the movement languishes, as in the past.
Also (as above) getting the government truly involved in these heated and heavy reproductive issues could end up backfiring (what if...treatments would be covered, but retrievals limited to 1-2, embryo freezing not allowed, selective reduction from higher-order multiples resulting from IF treatments not allowed, those wanting to be single parents by choice not allowed, same-sex couples not allowed.... I could go on).
I so WANT to support this. I want to believe that in the near future I could get MY treatments or those of my friends covered & we could build our families without that added monetary stress. But realistically, taking the big picture, cold-hard-facts look, at this point, universal IF coverage would be impractical. Given the varying beliefs (and seemingly un-ending supply of fertility) of the majority of Americans, it would be difficult to get the public behind it and insisting on it as a condition of universal health care may slow down any chance we have of getting much-needed healthcare policy change to happen.
With peace & friendly vibes,
Ana
Incremental vs. Monumental?
There's a lot of talk right now in the health care debate about the merits of incremental versus monumental change. Regardless of which way it goes, something's gotta change.
I have seen people bankrupt by medical bills, both without and with insurance coverage.
I have seen people acquire lifelong disabilities because they didn't have simple coverage -- when the government end up paying millions in services because someone couldn't access a $2 course of antibiotics, the system is fundamentally broken.
My friends and colleagues in other countries think that the U.S. situation is pathetic and mind-boggling.
As for myself, do I wish I'd had IF coverage all along, before spending our life savings on treatments (and then doing it again for another round of treatments)? Absolutely. But even more, I wish I could have had access to insurance that covered maternity. For much of the past 7 years, I've had to make life choices based on the possibility of getting pregnant. This has included seeking and maintaining insurance with maternity coverage, just in case I became pregnant, as I was trying so hard to do.
Last year after COBRA on a previous policy ran out, with my job not providing health care I had to find a totally different full-time job to do on top of my other job. The only individual insurance plan I could obtain that covered maternity had a one-year waiting period -- a year that I didn't have, considering that more than 6 years had already passed since I'd started TTC. There were financial and career benefits to the new job, of course, but if it hadn't been for the health insurance, I would have stuck with just one full-time job.
I have finally secured insurance that's not job-based that covers maternity (which I'm using extensively right now) and also would have covered infertility including IVF if I still needed it, which I will not if things go alright with this pregnancy. But, I pay over $6000 per year for it -- just to cover myself, not my husband nor my children when they do arrive. Health care is a huge part of our personal budget, and $6k is a drop in the bucket compared to what I spent on treatments last year, but most Americans don't have $6k per person lying around -- and so they take their chances.
Going back to my original point about incremental versus monumental change, I believe in my heart that change is coming, this year. This may be our only big chance at change, so we'd better make it good.
The Family Building Acts are ironic to me personally, to link OB and IF coverage, because it's been so difficult for me to secure either one. If we have to pick one, OB (and basic health care) should be the priority, yes, but maybe we don't have to pick. Maybe everything can change, all at once.
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