We are happy to recognize that there have been great improvements in caring for people with sickle cell disease (SCD); however, there are still some things we don’t know about the life-long condition which can have devastating effects on a patient’s health. Even the exact number of those affected by SCD in the United States is unknown. The Centers for Disease Control and Prevention estimates about 100,000 Americans are affected. Thanks to a recent bill that became law, we should have better intelligence in the future about how many people are affected by SCD.
The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act of 2018 was approved by both houses of Congress and signed by the President in December. In this day of partisan bickering, we’re happy to say this bill was a bi-partisan effort. It was introduced by Senators Cory Booker, D-New Jersey and Tim Scott, R-South Carolina in February 2018. The companion bill was introduced in the House of Representatives by Michael Burgess, MD, R-Texas, and Danny Davis, D-Illinois. President Trump signed the bill in early December 2018.
The bill reauthorizes a sickle cell disease prevention and treatment program and also provides grants for research, surveillance, prevention and treatment of heritable blood disorders. This is an important aspect of the new law. It provides grants to interested states, local health departments and institutions of higher education to help understand the prevalence and geographic distribution of the disease. As you’ll recall, the CDC can only estimate how many people are affected by this disease in the United States. Programs that help to increase surveillance should help experts refine the actual number of those affected in the future.
The bill will also create strategies to improve access to screening, treatment and management of SCD. If the medical community is to provide the best outcomes for SCD patients, those diagnosed with sickle cell disease must have options to access proper medical attention, as well as providers who have the latest information about treatments and health management options.
“This new law ensures that funding is available to provide better access to treatment and better treatments for patients across the country, which is extremely important,” said Nik Abdul Rashid, M.D., director of the Sickle Cell Treatment Center of Nevada, a specialty clinic of Cure 4 The Kids Foundation. “This law also sets aside funding for better surveillance of just how many people are affected by the disease, and what kind of treatment they are currently receiving,” she said.
Since the founding of Cure 4 The Kids Foundation in 2007, we have treated children and adult patients affected by sickle cell disease. The Sickle Cell Treatment Center of Nevada offers patients the most up-to-date treatment based on clinical research, good health practices and medical expertise in treating sickle cell disease. The treatment center offers on-going comprehensive clinics for sickle cell patients on a monthly basis. It’s one appointment, but the patient is seen by a number of specialists during that time to provide a full and true picture of the patient’s health.
Our sickle cell team includes a board-certified pediatric hematologist, pediatric nurse practitioner, pediatric neuropsychologist, palliative care and pain specialist, social worker, education specialist, child life specialist, clinical research associate and registered nurse.
We’re also part of the Pacific Sickle Cell Regional Collaborative (PSCRC), a grant-funded program through the U.S. Department of Health and Human Services focused on offering education, information and collaboration on sickle cell treatments and meaningful data collection.
Like all our clinic services, no patient is turned away from specialized treatment for financial reasons. Our Charity Care Program can help those without medical insurance and those unable to pay for treatment.
Our clinic is open to all pediatric patients with sickle cell disease from birth to 18 years old, as well as established adult patients. If you would like to learn more about what our clinic can offer sickle cell patients, or to schedule an appointment, please call (702) 732-1493.