Advocacy - The Real Work

I currently live in GA and I will be going to Columbia, SC tomorrow to meet with another Sickle Cell Advocate, by the name of Dominique Friend who resides in PA. She is an Author and has visited the White House to discuss policies for the treatment of sickle cell disease. Mrs. Friend is a part of a ground roots effort to create a National Family Coalition and we have joined forces since I am creating the SCD Soldier Network and our goals are the same. She is what I call one of my "Front Line Soldiers". She is in the trenches doing the real advocacy work. I was honored to be asked to assist her in mediating a situation.

Mrs. Friend received a frantic call from a sickle cell patient who was upset that the Palmetto Richland Sickle Cell Infusion Center in SC had changed their policies that limited her ability to get treatment. Typical infusion centers have a standard of care that allows patients with sickle cell disease to come into the center and receive care as needed in order to prevent them from going into the hospital as a result of a pain crisis. Often times if you are able to get treatment at the onset of a crisis you have a good chance of preventing a long hospital stay. The center just recently changed it's policy and now requires patients to call in for appointments although they are in a minor emergency situation. They are also limiting the availability of services to one day per week. There are other changes that were of concern as well, but those are the two that have to be changed if they are to serve the community in which they were created to serve.

The patient that called Mrs. Friend is currently in the hospital as a result of the added stress caused by this issue. When the center was contacted there was no cooperation by the director to speak with us. Later we found out that the staff informed the patients that if they spoke out against the center, they would run the risk of it being closed and no longer available to them. That type of threat caused us great concern, so we have tried to contact the media, the local sickle cell foundation as well as the Mayor and Councilman of that district.

I sent an email to Councilman Cromartie stating that there was an issue with a facility within his district and I was very clear in letting him know that the purpose of the email was to provide him with knowledge that there was a problem and that we would be arriving to try and mediate it. I also sent a copy of that email to the local sickle cell foundation and to Mayor Bob Coble. I was saddened by the response that I received via email from the Special Assistant to the Mayor, Julie Ruff. She stated that she was not quite sure what I was looking for from the Mayor's office or the councilman because they did not have jurisdiction over how the center operates and they could not interfere. I replied to her response and informed her that I did it as a courtesy so that the mayor wouldn't hear about first from the news. I thought it was settled until my second reply came back from Ms. Ruff and she wrote "As I stated, we have no jurisdiction over the hospital and it's affiliate".

The tone of that last message rang out with a clear notice that the Mayor's office could care less about what was happening at the sickle cell infusion center. Add the threats made by the center's staff and we have a problem that may be a little bigger than we anticipated. We are rallying up our small army and heading to Columbia SC, and it reminds me of how important real advocacy work is. Yes, I have sickle cell and I take it personally, but why provide services if you don't understand the importance of what you are providing. I hope that with a little wisdom, a lot of faith and prayer, we will be able to help the patient in SC receive proper access to a facility that was designed to help them manage a disease that they fight 365 days of a year. That's why I need my soldiers with me. What else has to happen before you agree that it is really time for sickle cell to get it's grown-up voice.