News Room
Sickle Cell and Depression
August 4, 2019
"They say those who suffer from chronic illnesses such as sickle cell may be at risk for depression. According to the Sickle Cell Information Center (scinfo.org), “The day to day stresses associated with the illness may contribute to feelings of helplessness, a feeling of not being in control, and create a vulnerability to develop depressive symptoms”. The NHS (nhs.uk) even goes as far as stating that half of people living with the disease will experience depression at least once during their lives."
Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
August 1, 2019
"Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state today tests for all 35 disorders recommended under a federal screening panel, and even in those that come close, rare diseases can fall to competing priorities."
NHLBI Stepping Up Efforts to Apprise SCD Patients of Therapies and Trials
August 1, 2019
"Wide interest in a CBS 60 Minutes story about a Florida woman with sickle cell disease(SCD) whose symptoms were eased through gene therapy has prompted the National Heart, Lung, and Blood Institute (NHLBI) to raise awareness of other work the National Institutes of Health (NIH) is doing in this disease."
A Report on the Guidelines for Pain Management in Sickle Cell Disease--Keith Quirolo, MD
June 2019
"Under prescribing and undertreating pain for people who have sickle cell disease has been a problem for decades. “Psuedoaddiction” is the term used to describe people living with SCD who are undertreated for pain in the emergency room. Patients are given lower than was previously prescribed pain medication and denied adequate treatment. Pseudoaddiction also encompassed the sharing or giving pain medication to others who had sickle cell disease who were under prescribed, obtaining prescriptions from more than one provider, using then illicit drugs such as marijuana to treat pain. To most physicians, these are all “red flags” that the person they are treating is addicted to pain medication. This is not the case for people who have SCD, it is due to the chronic undertreatment of pain by providers and to the disparity of medical care for people of color."
T-cells Promote Inflammation in Children with Sickle Cell as well as Adults, Study Finds
July 25, 2019
"Children with sickle cell disease, like adults, have a distinct group of immune cells, called innate like T-cells, that appear to promote the chronic inflammation associated with SCD, researchers report."
$19.2M Grant to Support SCD Trial into Red Cell Exchange in US and Europe
July 23, 2019
"To lessen the need for hospitalizations and slow or reverse the organ damage seen in sickle cell disease (SCD), scientists at University of Pittsburgh (Pitt) will use a $19.2 million National Institutes of Health grant to test red blood cell exchange transfusion in patients."
"Co-led by the University of Pittsburgh Medical Center (UPMC), the international clinical trial — called Sickle Cell Disease and Cardiovascular Risk – Red Cell Exchange (SCD-CARRE) — will be the largest of its kind."
Researcher reports the way sickle cells form may be key to stopping them
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July 2, 2019
"University of Houston associate professor of chemistry, Vassiliy Lubchenko, is reporting a new finding in Nature Communications on how sickle cells are formed. Lubchenko reports that droplets of liquid, enriched in hemoglobin, form clusters inside some red blood cells when two hemoglobin molecules form a bond—but only briefly, for one thousandth of a second or so."
U-M Pediatrician: Government Missed Opportunity to Improve Care for Children With Sickle Cell Disease
July 1, 2019
"Despite efforts to improve the standard of care for children with sickle cell disease, the nation falls short, says pediatrician"
"'We found that most children in the US with sickle cell disease were not receiving fundamental preventative care despite overwhelming evidence of its effectiveness in improving outcomes. That was a wake-up call,' says Freed, M.D., M.P.H., a pediatrician and researcher at the University of Michigan C.S. Mott Children’s Hospital."
World Sickle Cell Day 2019
June 19, 2019
"Novartis is sharing images and stories from around the globe that are intended to inspire the sickle cell community and raise awareness of the disease to help change how the world sees it."
"Together with Dr. Alex Kumar, a global health physician and photographer, Novartis is sharing images and stories from around the globe that are intended to inspire the sickle cell community and raise awareness of the disease to help change how the world sees it."
Click the link below to read their stories!
SCDC Yearly Reports on SCD in California 2010-2016
The CDC has finally published annual reports on SCD in Calfornia!
"The SCDC program determines how many people live with sickle cell disease and monitors changes in health over time. Click [the link] below to view California data, including number of patients, emergency department visits, and hospitalizations."
Dr. Patrice Harris Becomes First Black Woman President Of American Medical Association!
"Patrice A. Harris, M.D., a psychiatrist from Atlanta, Ga., was elected as the new president-elect of the American Medical Association (AMA) June of 2018 by physicians gathered at the Annual Meeting of the AMA House of Delegates in Chicago.
Now, in June of 2019, she was just sworn in an extravagant inauguration in Chicago."
60 Minutes: Could Gene Therapy Cure Sickle Cell Anemia?
March 10, 2019
Take a look at this recent attempt to cure sickle cell anemia by using gene therapy.
Proposition 71: the California Stem Cell Research and Cures Initiative
California's Stem Cell Agency (CIRM) was created in 2004 when 59% of California voters approved Proposition 71: the California Stem Cell Research and Cures Initiative.
That initiative created the California Institute for Regenerative Medicine (CIRM) to fund stem cell research in the state.
In addition to creating the agency, Prop 71 created a 29-member governing Board composed of researchers, business leaders and patient advocates.
Sickle Cell TRAIT & Kidney Cancer
Tamika Moseley
Renal medullary carcinoma (RMC) is an aggressive form of non–clear cell kidney cancer that typically affects young adults and is almost exclusively associated with sickle cell trait. Prognosis is extremely poor, with a mean survival of less than a year in most cases.
Renal medullary cancer is a rare malignancy almost exclusively seen in young patients of African ethnicity. These patients often present with the cardinal symptoms of hematuria (which is blood in the urine), flank pain, and an abdominal mass, and this malignancy has been associated with patients carrying sickle cell trait. It is estimated that 300 million people worldwide carry sickle cell trait, and the presence of blood in the urine in these patients should be treated as possible malignancy.
Renal medullary cancer was described in 1995 by Davis et al. in a case series of 34 patients collected over 22 years. He reported a highly aggressive neoplasm with microscopic morphology of sickled erythrocytes in the tissue. Sickle cell trait was linked to all the cases except one patient who had hemoglobin SC disease. To date, approximately 120 cases have been described in the medical literature, with only one report of its association with sickle cell disease. Nearly 75% of the tumor masses are reported to be on the right side and evidence of metastatic disease at the time of presentation is not uncommon.
