You are here
Advocacy Day on Capital Hill
My first experience with infertility advocacy came out of a sense of sheer frustration. I was sad that my body would not do what it was supposed to do naturally. The bills for our infertility treatment were piling up. We certainly could not afford what we were spending on medication and treatment. To add insult to injury, our insurance covered none of this. Then I read that our governor in Georgia, Sonny Purdue, had compared infertility treatment to plastic surgery. I got angry. And I was on lupron. Bad combination.
I sat down and wrote a letter to my state representative and my state senator asking if they would sponsor infertility insurance coverage legislation in Georgia. I read it, checked for errors and hit send.
The next day, I got a phone call from my representative. He and his wife had suffered from infertility and surprisingly enough, we had used the same doctor many years earlier. That was the day that House Bill 1012 was born. It died in committee later that year, but it existed and people learned from it. I always like to show people the letter in one hand and the bill in the other to make the point that just one voice can make a difference.
Last Thursday, nearly 90 women, men and grandmothers-to-be gathered at RESOLVE's annual Advocacy Day on Capitol Hill to speak for those suffering from a disease. The disease of infertility.
Health care is the issue of the summer in Washington. Hotels are sold out throughout the city. Congressional staffers are inundated. Signs advertising "Health Care, NOW" litter the streets. Everywhere you turn, there is a health advocacy group asking to be included in the current health reform talks. Diabetes. Cancer groups of every kind. Every disease has many, many groups that represent the patient interests. But there is only one group that is advocating for infertility patients in the legislative arena: RESOLVE.
We all understand the silence of infertility. Those of us that speak about it publicly often get well-meaning advice that can be painful to hear. Sorry, but relaxing will not open my fallopian tubes. Taking a vacation will not reverse my premature ovarian failure. And drinking a bottle of wine with my husband as part of a romantic evening, will not put microscopic jetpacks on his sperm to improve motility.
What would help is insurance coverage. Knowing that the financial burden is eased and we have more than one try to succeed and can do ICSI and other procedures deemed necessary by our physician will help us immensely. It makes financial sense and improves the health of our mothers and babies. The bottom line is that infertility is a disease just like any other chronic disease.
So on Thursday, our advocates represented the infertility community with grace and dignity. They took time off from work and paid for their trips out of pocket in order to give a voice to millions. They came from states as far away as California and Montana. The South was well represented with Georgia, North Carolina, Virginia, Louisiana and Alabama. To the North we had New York and Vermont. I do want to recognize Reproductive Biology Associates led by Dr. Andy Toledo in Atlanta, GA. RBI paid for four patients to attend Advocacy Day to represent Georgia.
It is not easy to tell your story to a stranger; particularly to a congressional staffer that may be younger than you are, but these people did. I was particularly touched by a woman from North Carolina who there on behalf of her daughter, recently out of the military. With tears streaming down her face, she explained to the young women on a senator's staff, that family did not only include the husband and wife, it included grandmothers and grandfathers. In fact, there was another mother/daughter pair from Florida. I was honored to meet both of these mothers and hope that they will become grandmothers soon.
There were men there. Some came with their wives, but one man was there alone. He felt he had to support his wife in this way. It was validating for our lawmakers to see that this disease affects men just as much as it does women.
And the women. I cannot say enough about the spunk, the intelligence, the determination and the bravery shown by the women that were all over the Senate and House office buildings. There were a lot of tears, but there was a lot of laughter as well (one of the Georgia girls was sure that the young men staffers were hired not only for their intelligence but for their "cuteness, y'all").
For those that could not be there this year, know that this summer is the summer of health care. We want to make sure that infertility is part of the discussion. Please stay tuned to learn what you can do to help. Our infertility community needs EVERY SINGLE ONE OF US to speak up and we need that to happen this summer. If you have children, remember those that are still trying and be a part of this. If you are still trying, take the time to read and respond.
Above all, applaud our advocates. And please, step up to join them.
As I always say, one voice can make a difference but together, wow, our voices are a collective roar.
One that simply cannot, and will not, be ignored.
RENEE WHITLEY is the co-chair for the National Advocacy Committee for RESOLVE: the National Infertility Association. She has been involved in infertility advocacy since that first bill many years ago. She lives in Atlanta, GA and works in public relations when volunteer advocacy allows!
She and her husband are the parents of a child conceived through ART. She remains good friends with her RE, Dr. Joe Massey.