Making Them Understand

I just wanted to follow-up on my last post. Well, Dominique Friend of the Sickle Family Coalition and I went to the Sickle Cell Infusion Center in Columbia, SC. We did get an opportunity to speak with some staff members and administrators there, about some of their policies. After receiving a call from one of their patients it became necessary to make an in-person visit. If the center's director would have just taken the time to address the issue over the telephone, we could have avoided the visit. Since a visit was necessary, we wanted to make sure that we impacted the rules that they implemented at the center. There are some policies that seemed counter-productive to us and we left feeling as though they really listened to what we had to say. They asked for us to give them until after the holiday's to allow them to evalute their current program and take our suggestions into consideration. We felt that it was a fair request and if things are still the same and patients are feeling as though they are not receiving the treatment that the center claims to provide, we will be back. It's not always easy for you to get people to understand what you need or what you are trying to say when you are in pain, so that's when an advocate makes the most difference in during an incident. The patient was very emotional about the situation, because it didn't seem as though anyone was hearing her. After trying to reach the director without success, we became concerned. As an advocate, you have to keep a level head no matter how upset you are about the situation and believe me it takes tact and restraint. It's a must if you expect to make an impact. Overall the meeting was a success and after the meeting with the staff at the center we used the trip as an opportunity to recruit members for the Sickle National Coalition and possible SCD Soldiers. I am sharing a few of the pictures from our visit to Columbia, SC in a little video featuring a snippet from the Soldier Anthem.

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.

Time To Give Sickle Cell A Grown-Up Voice

In 2010 we will be celebrating the 100th anniversary of the discovery of sickle cell anemia. Most people are not aware of what this blood disorder is or how it affects the individuals who have it. That amazes me because so many people are affected by this disease and it affects the African American population in a huge way. 1 in 500 African American babies are born with sickle cell disease each year in the United States alone. The national and local Sickle Cell Associations do a great job addressing the needs of children with the disease, but adults have issues that have not been addressed in a way that brings enough support. Since earlier statistics didn't have much hope of anyone living long enough to reach adulthood, it left the first generation of adult survivors fighting primarily on their own. We love our poster child but after 100 years it is time for sickle cell disease to get a grown-up voice. It is my mission to create a nationwide advocacy group for adults with sickle cell disease through the formation of the SCD Soldier Network. This group would be responsible for providing support services for adults with sickle cell as well as financial assistance for those who are head of households that are experiencing financial hardship due to being hospitalized from the affects of the disease. The financial aspect of the group would be a small part of the services that will be available. Many of the programs that will be put in place will come straight from the suggestions of those in the sickle cell community. I have the disease myself and I know that many times I needed help that was just not available. This network would try to address as many of those issues as possible. While I take my journey to developing the SCD Soldier Network, I will be posting a video blog that is being hosted on Dallas Austin's website at http://www.8dazeaweakend.com I will be posting weekly until September 2010. In the video blog I will give updates to my progress. I will post it every Monday and it will be called "Will Sickle Cell Get It's Grown-Up Voice". If you have trouble finding it among all of the other post, just do a search for sickle cell and all of my video blogs will be listed. I am already approaching the end of week three and so far things are going great. I wrote an anthem that is intended to ignite the movement. It is being recorded and I have provided a sneak peak of it in my video blog(week two)as well as posting it at the end of this blog. There are so many things that are happening and I have a mountain of things to do, but I wanted to take out a little time to tell you about it. Don't forget to take a look at my video blog and leave me a comment, because I need to hear what you think about my mission. Until next time be safe and enjoy the holiday season. By the way look at my video blog(week one) and find out a little something about sickle cell.