First Lady Melania Trump led a roundtable discussion on Monday with the Health and Human Services Department (HHS) on “Improving the Lives of Americans Living with Sickle Cell Disease” in recognition of National Sickle Cell Disease (SCD) Awareness Month.
The roundtable was held to bring awareness to Sickle Cell Disease with patients of various ages, advocates, researchers, and medical professionals.
“Although we have known about this disease for over one hundred years, too many Americans living with Sickle Cell still do not receive the quality care they need and deserve,” Melania said. “But together, we can bring help and hope to so many children and families. We are surrounded today by doctors, researchers, advocates, parents, and patients–all united by our belief that a better and healthier future for our children is within our reach.”
Sickle cell disease is the umbrella term for a group of inherited conditions that severely affect red blood cells. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. However, a person with sickle cell, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.” The sickle cells when travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such as infection, acute chest syndrome, and stroke.
The disease affects about 100,000 people in the U.S. and disproportionately affects African and Hispanic-Americans to a higher degree.
“As we continue to observe National Sickle Cell Disease Awareness Month, I want to recognize the bravery of those living with this disease, especially children. You deserve a long and happy life, free from pain, and we will continue to fight until nothing stands between you and your dreams,” Melania said.
The First Lady emphasized how one of the pillar ‘Be Best’ initiative of children’s well-being by noting how the effects of Sickle Cell Disease begins in early ages that can cause “ episodes of extraordinary pain that put patients at risk for organ damage or stroke.”
Melania reaffirmed the Trump Administration goal of finding a cure as well as the progress so far being made in treating this disease earlier with new life-saving therapies but noted that there is still much more to do.
“We have made progress in treating this disease – early identification and new life-saving therapies can help. The President has signed a bill that funds research and treatment, and the Administration has launched a program to provide new training for healthcare workers. But there is still much more to do,” the First Lady said. “Through leadership from HHS and Admiral Giroir, the Administration announced funding to increase the use of recommended medications for children. HHS has also partnered with the National Academies of Sciences, Engineering, and Medicine to publish the ‘Strategic Plan and Blueprint for Action’ to address Sickle Cell Disease in the United States. And today, the Centers for Medicare and Medicaid Services is releasing a new National Sickle Cell Disease Infographic that will provide important information to both doctors and patients and improve the quality of care across the country.”
The participants at the event shared their experiences living with Sickle Cell or those caring for a loved one with the disease, detailing the disruptive pain crises and severe medical complications. Patients also discussed the need to raise the standard of care for both children and adults with sickle cell, emphasizing the importance of pain management.
The “star of the show” Samuel Price, a 12 years old boy sitting next to Melania told the story when he learned he had sickle cell and how he discovered chess and doesn’t “think about pain anymore.”
12-year-old Samuel Price shared how Sickle Cell Disease has affected his life—and how he is learning to manage pain and rise above his medical challenges.— The White House (@WhiteHouse) September 14, 2020
Way to go, Samuel! 🇺🇸 pic.twitter.com/OETDn20Gls
Another participant, Shamonica Wiggins talked about adults with the disease also become victims of the opioid crisis and asked the First Lady to become a sickle cell disease “our ally and make this cause your cause as well
Melania concluded by reaffirming her commitment as First Lady to improve the care for those with sickle cell disease.
“I want to recognize the bravery of those living with this disease, both children and adults. You deserve a long and happy life, free from pain, and we will continue to fight until nothing stands between you and your dreams,” Melania said.
For the first time since 1983, the White House has elevated this important issue with a Presidential Proclamation issued by President Trump on August 31, 2020. In 2018, President Trump signed the “Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act” authorizing initiatives for sickle cell disease prevention treatment and additional research programs.
Under President Trump, the National Institutes of Health has launched the “Cure Sickle Cell Initiative” to accelerate new genetic therapies, while the FDA has announced accelerated approval for two effective therapies.
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