National Infertility Awareness Week 2013

April 21, 2013Carole 1 Comment »

What a week it has been.  This last week (beginning on April 15) we saw horrible events at the Boston Marathon, tearing apart the lives of many families. I am exhausted by the violence and carnage we must, it seems, expect in the modern world, but within the mayhem, I see hope. Each time we experience these tragedies, what makes it bearable, is realizing how reliably helpful most of our fellow humans are. Many who could have run away from the marathon mayhem ran back to render aid  or ran forward to donate blood. They dragged down the fences, they applied tourniquets from pieces of clothing, they wheeled the injured away to ambulances, even as they themselves shook and trembled as their fight-or-flight instinct struggled with their other human instinct – to help.

So what does this have to do with National Infertility Awareness Week? Nothing and everything. At times like this, we tend to reevaluate what is important to us –since life is shorter than we think- maybe much shorter than we think. We automatically hug our kids, our lovers, our parents, our siblings and friends tighter. The fragile emotional bonds between us make our lives rich with meaning.

If you want children and can’t have them for medical reasons, that creates a hole in the fabric of your life, precisely because these bonds are so precious. Now, I am not saying that these bonds can’t be just as precious between ourselves and other people who are critically important to us–but if you want children and can’t have themthat is a big deal. It is not just a social choice, it is a medical right to have access to infertility treatments.

I have been researching the barriers that infertility patients encounter to gain access to infertility treatments and the results have been illuminating.  Financial and social issues are the two biggest barriers and they are linked. Various studies have shown that there exists a social bias against single women, older women, lesbian women and women with disabilities, who are deemed somehow less deserving of extraordinary measures to become pregnant. Women in minority groups, particularly if they are poor are also more likely not to have access to infertility treatments. They may not even be offered treatment because IVF is considered too expensive for them. Under the current system, it often is. If you are in one of these groups- or simply don’t have the cash to pay for IVF- you are less likely to have access to infertility treatments. In some cases, it is because physicians elect not to provide care to these groups because of personal “values” about who should be a mother. In other cases, it is because insurance companies have decided to exclude certain groups (gay, single or older women) from their policies.

Society has done a poor job of supporting infertile people. The knee jerk reaction is often “Just Adopt’! which is bad advice for several reasons. First, adoption is not a good choice for everyone who wants to have a family. Second, adoption is hard to qualify for and expensive. The same groups of people who are excluded from infertility treatments (older, single, LGBT etc. ) are likewise often excluded from adoption due to discriminatory adoption agencies policies. Finally, it is pretty nervy to assign this problem of homeless kids solely to infertile people to solve. Unless you have already adopted a child, refrain from telling someone else to “Just Adopt”.  It just makes you look stupid.

So what does this mean? It means, currently, with the exception of a few islands of help,  you are on your own in figuring out how to get access to high quality infertility treatments. This could change if public perception of the infertility problem becomes more realistic (with less Octomom tabloid coverage and more education about causes and treatments). This could change if insurance policies and even  health initiatives like the Affordable Care Act would redefine infertility care as an essential medical benefit– like cancer treatment or setting a bone. Studies have shown that the emotional and psychological toll of infertility diagnosis and treatments can be as devastating as the diagnosis and treatments for cancer. The fact that infertility is not trivial is not fully appreciated. Education can change that. Advocacy can change that.

So about those islands of help… One of those islands is a small but growing non-profit, called Fertility Within Reach, (incidentally, located  in the Boston area), whose mission is to help people help themselves to get the infertility treatments they need. Sometimes you just have to know how to ask for something to get the help you need from your doctor, from your HR department, from your insurance plan or from your legislator. Fertility Within Reach has created patient toolkits to help you advocate more successfully  for yourself. You can download action checklists from the site. You can read about patient success stories on their site. Hopefully, you will come away feeling empowered.

I am working to find dollars to pay for the educational outreach that Fertility Within Reach offers in the form of  free tool kits that are available on their website. We are planning a webinar series in the Fall if we can find funding. If desired, Fertility Within Reach also offers one-on-one coaching for patients to guide them through navigating insurance etc. As I apply for grants from foundations that support women’s health issues,  I am running into the same problem with multiple foundations that you would think–based on their websites– would support infertility access as part of the bigger picture of women’s health. They say that they support women’s health and reproductive health initiatives but that does not mean they are sympathetic to or willing to support people with infertility. They will support contraception and abortion but not infertility. I still haven’t figured out how to extend their empathy (and dollars) toward programs to help infertility patients get access to care. So I am working on communicating better with these agencies.

So foundations, insurers and government programs aren’t yet rushing to pull down the fences to provide access to infertility treatments for people that need it.  But we can. Fertility Within Reach has partnered with See your Impact.org, to raise funds to support their programs during National Infertility Awareness Week which is next week (April 21-27). I have asked my colleagues, friends and family to support this initiative. Now I am extending this request to you to help other members of the infertility community. If you can give even $5 or $10, you can make a difference.

Next week for National Infertility Awareness Week, please check out Fertility Within Reach and if you can, send them a donation at my See Your Impact fundraiser page. I am hopeful for better days next week. Peace.

 

© 2013, Carole. All rights reserved.

One response to this entry

Join the discussion