ad·vo·ca·cy
noun ˈad-və-kə-sē
: the act or process of supporting a cause or proposal : the act or process of advocating something
The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time to put a stop to the death and sickness caused by a flawed system. Their pain, courage, and knowledge gave us Washington Days.
It took my friends in the bleeding disorders community a couple years to talk me into going to Washington Days. They kept telling me I’d be good  at it — I have the passion and I am well spoken — all attributes a good advocate has. I had many reasons NOT to go; For instance: Max was still in school, the trip would mean time off from work, and I didn’t know anything about politics. However, like so many other things in my life, envy is what finally spurred me to do it. I saw people come back energized, and taking pride in what they had done. I heard that it really made a difference.  I felt the desire to be part of that and that desire outweighed my self doubt.
The first year that Max and I went we were with a couple from another congressional district. It was amazing and eye-opening. We went from nervous to excited and then, finally, the “aha” moment came when we realized that we really could make a difference. Max and I agreed that it was his disease and he was the one to do the talking. Max would simply nod slightly and I’d know it was time for me to step in. Other times he would ask me to talk and occasionally I would ask him if I could have input. It was amazing. We spoke about how having hemophilia affects both of us. We were a team.
The following year we were the only family from New Hampshire to attend. We carried a letter with us that we were asking our Senators to sign on to. When we got back home and were notified that one of our Senators had in fact signed on, I saw the moment when Max realized he had done something that truly could help his community. That moment is something that no other experience could have given him.
Last year two new families joined us. When it was time to head to Capitol Hill, I watched as Max went to the younger kids to tell them, “Be sure to offer your hand to shake. Look them in the eye. Speak clearly and try to stay on topic.” Wow. What parent wouldn’t be proud?
One of the things he and I discussed last year after the event was what he, as the child, felt is and isn’t okay for a parent to do. For instance, pulling up the child’s sleeve to show their “tracks.” He said that should be the child’s choice, not show and tell by the parent. Max felt that letting the person with the disease talk, no matter what their age, was vital. Ultimately the conversation led to him thanking me for always letting him be the primary speaker — after all, it is his story. I think as parents we are used to speaking for our kids. We’ve been advocating for them since birth, haven’t we? Our kids are pretty savvy; if we let them, they will amaze us with their knowledge.
Every one of us that has a child with a chronic illness is an advocate, whether it’s in an emergency room, school, or on a state/national level. We in the bleeding disorders community are fortunate to have had courageous people before us give us footsteps to follow. I find that now I’m the person pushing others to go and stand up for what our community needs. We have been left with a legacy that not every disease community has — we should be careful to treat it like the precious gift that it is.
When your chapter asks you to go to Washington or your state capitol, forget all the excuses and go. Right now. Some insurance companies are placing clotting factor into specialty tiers, which could increase co-payments to patients.
We must continue to be advocates to make sure the bleeding disorders community has a safe and attainable product. Anyone in the bleeding disorders community can be an advocate. Right now. And always.
Maryann lives in New Hampshire and her 21 year old son, Max, has put his gift of independence to good use and is living away from Mom.
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*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
