Resources

 

Disability Rights & Resources,  www.drradvocates.org (205) 815-6152 1418- 6th Avenue North, Birmingham, AL 35203  Find out what resources are available to you if you live with any kind of disability.  They can also assist you in finding housing and funding for the housing. 

ReMEDy, http://www.facebook.com/remedybba (205) 783-91702610- 3rd Avenue South, Birmingham, AL 35233  Are you in need of medical equipment but you can’t afford it?  ReMEDy can provide you with all types of softly used medical equipment such as motorized wheelchairs, hospital beds, shower chairs and anything that will help someone experiencing or living with a disability and has limited income.

Allsup

(800) 279-4357, or visit www.allsup.com, Helped me in my time of need by completing all of my paperwork for me to receive SSI Disability Income.  They were completely professional, patient, and handled everything with me not having to worry about anything.  If you are looking for a company to help you I recommend this company time and time again to people. Allsup Inc. is the nation’s premier provider of Social Security and Medicare disability claim services. Whether providing service directly to the consumer or working with employers, insurers, group health plans, or workers’ compensation benefit programs, their expertise and systems have resulted in a 98 percent award rate and maximum recoveries from both Social Security and Medicare.  Tell them I referred you. 

Cord Blood Registry

www.cordblood.com, .800.588.6377 ext 216 One of my platforms as an advocate for Sickle Cell Disease is encouraging pregnant women to bank the cord blood (at no cost if you have a chronic illness like SCD) or donate it to research. If you live with a chronic illness the umbilical cord blood from your baby can possibly cure you, save your life, or find a cure for another disease.  Many people don't realize that the umbilical cord is thrown away when it can be made useful in so many ways.  Let them know I referred you (this is really important). 

Prescription Savings

  1. www.USPharmacyDiscountCard.com, or call 855-792-5195  Have you found that some of your prescriptions are not covered by your insurance?  Well don't fret, because there is a company that can assist you with this dilemma.  USPD is a company that U.S. pharmacies everywhere (over 50,000) on all FDA approved prescriptions.  Save up to 75% on your prescriptions instantly.
  2. Xarelto Savings, can help drastically decrease the amount of money you pay for Xarelto that is commonly used as a blood thinner and it also helps to decrease the chance of having a stroke.  Many prescription plans will not pay for this medication however, you can receive help by calling 8

FDA Salutes World Sickle Cell Awareness Day!

Posted on June 19, 2014 by FDA Voice By: Jonca Bull, M.D.

Today is a World Sickle Cell Awareness Day, an annual reminder that Sickle Cell Disease (SCD) is a major area of unmet medical need that causes serious and devastating consequences to many thousands of children and adults. It is an occasion that has been commemorated each year since 2008, when the General Assembly of the United Nations adopted a resolution recognizing SCD as a global public health concern. I am happy to have this opportunity to help raise awareness about the impact of this disease on patients and their families, and to emphasize the need for additional therapies to prevent or treat SCD and its complications. SCD is a genetic disorder that most commonly affects people of African descent; however, it also affects Hispanics, Asians, and people of Mediterranean and Middle Eastern descent. Millions of people are living with this disease all over the world. Here in the U.S., there are about 100,000 people with SCD and it is estimated that the disease occurs in one of every 500 Black or African American and one out of every 36,000 Hispanic-American births. Additionally, one in 12 African Americans carry sickle cell trait, the gene for the disease. People with SCD have “sickled” or abnormally shaped red blood cells that get stuck in small blood vessels blocking the flow of blood and oxygen to major organs in the body. These blockages can cause severe pain, organ damage or even stroke in some cases. SCD is a chronic and debilitating disease affecting people for their entire lives. The Food and Drug Administration is committed to continuing the dialogue around Sickle Cell Disease to facilitate the development of safe and effective treatments to prevent the disease or reduce its complications. On February 7, 2014, our agency held a Patient-Focused Drug Development meeting to ask patients with SCD and their families, caretakers, and advocates about the various aspects of their disease and how it affects their lives on a daily basis. We heard from approximately 300 people on their treatment regimens, symptoms and complications from treatments, and what they would like to see in terms of future treatments. FDA learned a great deal from this meeting, and we hope this is the first of many successful collaborations leading to the development and approval of effective therapies for SCD. Only limited treatment options exist for this disease, and more development is needed. In 1998, the FDA approved hydroxyurea to reduce the frequency of pain crises and the need for blood transfusions in adult patients with Sickle Cell Anemia. While the use of hydroxyurea has proven to be helpful in reducing complications in some patients, it is not universally effective and the mechanism of action is not completely understood. Other treatments, such as chronic transfusion therapy, although effective for some, can present problems for patients, which limits their use. Stem cell transplantation has been noted as a potential cure for SCD, but due to the lack of matched donors and associated risks during and after the procedure, this is also a limited option. As part of the FDA’s effort to facilitate the development of new SCD treatments, our Office of Minority Health has funded research to identify new methods to improve the safety and availability of blood for transfusion, and FDA’s drug experts are working with members of the pharmaceutical industry and outside researchers. As we take the time today to reflect on the impact of Sickle Cell Disease, our agency encourages the search for new and better SCD therapies through medical innovation by using information gained from patients and their caregivers in the recent Patient-Focused Drug Development Meeting on Sickle Cell Disease. We will continue to join our efforts with those of patients, researchers, industry, and sister agencies such as the Centers for Disease Control and Prevention and the National Institutes of Health, to lessen the burden of Sickle Cell Disease across the globe. Jonca Bull, M.D., is Director of FDA’s Office of Minority Health - See more at: http://blogs.fda.gov/fdavoice/index.php/2014/06/fda-salutes-world-sickle-cell-awareness-day/#sthash.h44DcPnx.dpuf