Resolve Advocacy Day

Last Thursday I had the privilege to volunteer for Resolve's day of Advocacy, to lobby on the hill for infertility related issues. Besides being a part of a great cause, it was an amazing experience to find myself among a group of women who have fought so hard to build a family. The stories and passion these women shared with each other and with the various legislative aides and representatives we met with was awe-inspiring.

Our mission was 3-pronged. Get representatives and senators to sign on to the Family Building Act of 2009, gain a voice for infertility as part of the health care reform conversations and a $250,000 appropriation for the CDC to create a public health and infertility action plan. I had the opportunity to "sell" these ideas to 4 different offices - Senator Cardin (MD), Senator Spector (PA), Senator Burr (NC) and Representative Van Hollen (MD). Though I was officially representing Maryland, as we had such a large contingency many of us participated in various other meetings from different states to support our peers. Specifically for me PA and NC each only had one constituent who was able to come to DC for the day so I was there to be another voice for them and ensure they didn't need to walk into a room alone.

A little bit more background for those that are interested. Currently, only 15 states have some level of regulation on health insurance that requires levels of infertility coverage. However, many people are unable to tap into their state mandates, given the crazy specific language and criteria. For example, one woman I met on Thursday told the story of her spouse he has a rare genetic condition that he has no sperm - no surgery/extraction can help there is nothing there. However, Maryland's mandate will only cover infertility procedures when the sperm of the male and the eggs of the woman who are married to each other are used. They are getting no insurance help and must come up with $25,000 to try even once for a successful pregnancy. Alternatively, many women with fallopian tube issues have surgeries to remove scar tissue or repair tubal issues. While no affective link between these surgeries and increased fertility have been demonstrated, these $30k plus surgeries are almost always covered by insurance. However, wouldn't the money be more effectively spent on 2-3 IVF cycles that have over a 70% success rate at that point? Even with the strict guidelines of some of these state mandates, states with infertility coverage have shown decreased overall health care costs than other states. This is partially attributable to the fact that additional fertility coverage usually leads to more appropriate medical conditions, including single as opposed to multiple births. Less medical procedures and medications are required for a successful pregnancy, less costs are incurred during the pregnancy and delivery and there are less long term costs on the system. Did you know a premature baby is automatically put on medicaid? One woman shared that the 21 days her twins spent in the NICU cost over $100K - not to her pocket though - to the state medical system. Additionally, uncontrolled procedures, like IUIs, as opposed to IVF have a much greater incidence of multiple births, yet cost up to $10K less, so without insurance coverage many people try to go that route.

The Family Building Act proposes to close some of these loopholes by creating a federal mandate that any insurance that provides OB/GYN care provides full infertility coverage. Let the appropriate medical decisions be made between the doctor and the patient and not based on finances. Write to your representative and senator and ask them to support the Family Building Act of 2009.

Enough ranting for the moment, more to come later.

In response to a previous comment

My apologizes for a delayed response - I need to figure out how to have the site alert me if there is a comment. Second - I wish you and your husband success on your family building journey.

To your question - personally, I would be hesitant approaching someone that I wasn't close with and sure that they were dealing with the same issue I was. There are many reasons why people might not be having children - economics, education, job issues or medical. Without knowing which you run the risk of potentially offending the person. My two suggestions would be if you have a friend who is closer to this person maybe they could act as an intermediary for you. Alternatively, if you are comfortable being open just start talking about it in front of anyone and people will find you. I can't tell you how many people have come my way even indirectly because I made a comment to someone else. And I'm talking along the lines of - we're going through infertility treatment, I had to get up so early this morning for monitoring for treatment, we're working on building a family but need some medical help - anything you feel comfortable with.

Alternatively - find a support group through your clinic or Resolve - they might not get the community you are coming from but they get what you are going through. Ask the mikvah attendant - when I first wanted someone to talk with I called up the woman who runs the local mikvah and she put me in touch with someone. Join an online support group - ivillage, soulsisters for pcos, conceiveonline, atime, etc.

I hope some of this is helpful to you and I am more than happy to talk with you via email or phone - you can reach me at irbranda at yahoo.com.

Good luck on your journey.