I was invited with a few core others to do an interview with the Acting Director Dr. Shurin of The National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH). It was a short interview but informative. The meeting consisted of about three or four representatives of the sickle cell community who posed questions pertaining to sickle cell disease and the strides NHLBI is making to further research, awareness, education & the policies that will make them all happen.
*Has there been a surveillance project identifying the needs of the sickle cell population?
Dr. Shurin’s response: a Survelance Project has been established to develop guidelines to assure the needs of the sickle cell community are met. The details of those guidelines have not yet been published but will be once everything is established.
Here is a snippet of what NHLBI is doing with this project:
(follow this link to read the rest of the article, http://www.nih.gov/news/health/feb2010/nhlbi-18.htm)
NHLBI, CDC Launch Surveillance and Research Program for Inherited Blood Diseases
Six States to Study Sickle Cell Disease and Thalassemias in National Pilot Project
Medical researchers are developing a new surveillance system to determine the number of patients diagnosed with a family of inherited blood disorders known as hemoglobinopathies, including sickle cell disease, thalassemias, and hemoglobin E disease.
The National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health is funding the four-year pilot project, which will involve the Centers for Disease Control and Prevention and six state health departments, to create ways to learn more about the extent of hemoglobinopathies in the United States.
… The research will also help describe the demographic characteristics of individuals with these conditions as well as their geographic distribution. Researchers will also examine the existing health care resources available for patients with hemoglobinopathies.
---This Surveillance is key to identifying where patients are, what may be lacking in that area and how we can measure
*How is prioritizing since this is an old disease but there doesn’t seem to be an urgency unlike with other disease?
Dr. Shurin’s response: We do need more research however; the reimbursement level is low for people to be treated & tried in these clinical trials. Congress is important to keep the pressure on & not just on the physician’s. Sickle Cell Disease Guidelines which aim at helping make SCD a priority. What the NHLBI Has Done Up to Now
Additional Information I found on the topic:
2008 new structure and innovations in SCD program
In March 2008, after a rigorous program assessment, extensive public input, and advice from the National Heart Lung and Blood Advisory Committee, the NHLBI announced a comprehensive and innovative restructuring of its research SCD program. As a result, the NHLBI is moving forward with the following innovations to its SCD portfolio:
• Basic science: Support for basic research will be expanded through funding of investigator-initiated grant applications and through NHLBI-initiated RFAs focused on the pathophysiology of SCD, the biology of pain in SCD, fetal hemoglobin switching, and genetic modifiers of disease expression and progression.
• Translational and clinical research: The NHLBI reconfigured the Comprehensive Sickle Cell Center (CSCC) program into a Basic and Translational Research Program (BTRP) with dedicated training components.
• Participation in clinical research: The scope of clinical research trials will be broadened to allow a greater number of people with SCD to participate in NIH-sponsored clinical research trials.
• Community outreach: In partnership with the Sickle Cell Disease Association of America and other patient advocacy groups and professional organizations, the NHLBI will develop evidence-based guidelines for the care of people with SCD across the lifespan that can be used by health care practitioners throughout the world.
• New resources for medical care: The NHLBI is in the process of creating resources that will improve the medical care that is provided to individuals living with sickle cell disease.
2009 workshop on awareness and educational needs of SCD community
In September 2009, the NHLBI held a workshop to help inform NHLBI program staff of the awareness and educational needs that the sickle cell community would like to see addressed on a national scale - the SCD Awareness and Education Campaign Strategy Development Workshop. This workshop brought together individuals with sickle cell disease, community based organizations that serve the sickle cell population and representatives from the health care community. The goals were to determine where there are gaps in sickle cell awareness and education, what approaches could be taken to help close these gaps, and what partners can help the NHLBI address the health communication needs of the sickle cell community.
2009 - present
The result of all these deliberations is the current major effort at NHLBI in leading the development of a set of evidence-based guidelines for the management of sickle cell disease. The guidelines will be principally aimed at primary care practitioners and their patients to help manage the ongoing processes of the disease. The guidelines will also be valuable to hematology specialists and their patients. The process also will identify areas where additional research is needed to obtain evidence that can inform practice
*Do enough people with sickle cell anemia participate in the clinical studies available to help aide in its success?
There is an issue with having minorities participate in clinical studies which are needed to further research success. Volunteers can participate in studies by visiting: http://clinicaltrials.gov/ct2/results?term=sickle+cell+anemia
*Who is involved with putting together these guidelines? Are any sickle cell patients involved in speaking up about the needs of the community from the patient’s perspective and with insights only sickle cell patients can give?
Dr. Shurin’s response: the table of people involved in this project consists of mainly administrators however; an employee associated with the project has sickle cell and can add the patient perspective.
*In asking this question I was hoping to hear that mainly different walks were involved with putting the guidelines together namely, physicians, nurses, administrators, patients, family members of SC patients, social workers that work with the SC population, etc. However, that was not the case. My hope is that in the end the guidelines truly cover the vast majority of problems, needs, and issues sickle cell patients face. When they become available & I read them, know that I’ll share my views on them. I look forward to your comments on them as well.
I did ask: Do you know if new steps are taken to help ER’s restructure the way they treat & care for SC patients ie. Waiting time, pain management?
Dr. Schurin's response: SC patients will need to speak to their hospital administrators and work together on making those changes. It’s difficult to work on this issue as a whole because each hospital runs differently & have different policies so the more effective means would be to work with the hospital social worker who advocates for you. That would make a load of difference with the administrators of the hospital.
What can be done to create a greater pool of donors in the blood bank for Bone Marrow Transplant?
Dr. Shurin's response: By making this none to your readers that there is a need. The more people donate the better pool of donors there will be for transplants.
I had other questions like, why there have been so many Sickle Cell Center closings; How to better educate doctors and nurses that work in the ER’s. However, we weren’t able to get to those. I want to encourage my readers to not only become aware of the issues presented here but to stand up and be apart of the solution. We can start “together” by encouraging those we know to donate to the bone marrow bank, volunteer for those clinical studies & holding the administrators in your varying hospitals accountable--to take notice of the needs of SC patients. We can have success but we need to not only rely on institutions like NIH or NHLBI but hold ourselves accountable as well.
Join me in the fight.