CHARLOTTESVILLE, Va. (WVIR) -As part of University of Virginia’s efforts to reconcile its controversial past, Wednesday, it formally dedicated Pinn Hall in honor of Dr. Vivian Pinn. Pinn is one of the earliest African-American women to graduate from the UVA School of Medicine. She went on to found the Office of Research on Women’s Health at the National Institutes of Health.
The school celebrated her life and legacy during the “Medical Center Hour” held Wednesday. “I don’t see this as an honor for me but really as a symbol for women, people of color, and others who struggled to see this name just as a symbol for them, for the pioneers who proceeded me and hopefully the many who will come behind me,” Pinn said.
Pinn College, one of the medical school’s four colleges, is also named after Pinn.
Iesha Thomas has been in and out of hospitals battling sickle cell disease since she was only 8 months old. This summer, 33-year-old Thomas became the first adult to be cured of sickle cell disease with a chemotherapy-free procedure at University of Illinois Hospital & Health Sciences System (UI Health), the University reported. Thomas is one of 12 adult patients cured of sickle cell disease as part of a clinical trial at UI Health that used a unique procedure for stem cell transplantation from healthy tissue matched from a sibling donor.
Findings from phase I/II of the clinical trial are published online in the journal Biology of Blood & Marrow Transplantation.
Stem cell transplants have been used for years as a means of possibly curing sickle cell disease. However, before the stem cell transplant could be completed patients would have to endure a taxing course of drugs to kill the cancer cells, otherwise known as chemotherapy.
The more traditional form of stem cell transplant uses chemotherapy to destroy the patient’s own bone marrow, which shuts down their immune system and makes them vulnerable to infections.
The new technique – first developed and performed at the National Institutes of Health campus in Maryland – eliminates the need for chemotherapy to prepare the patient to receive the transplanted cells and offers the prospect of cure for tens of thousands of adults suffering from sickle cell disease – many of them Black Americans.
About 90 percent of the approximately 450 patients who have received stem cell transplants for sickle cell disease have been children. Chemotherapy has been considered too risky for adult patients, who are often more weakened than children by the disease.
“Adults with sickle cell disease are now living on average until about age 50 with blood transfusions and drugs to help with pain crises, but their quality of life can be very low,” says Dr. Damiano Rondelli, chief of hematology/oncology and director of the blood and marrow transplant program at UI Health, and corresponding author on the paper.
“Now, with this chemotherapy-free transplant, we are curing adults with sickle cell disease, and we see that their quality of life improves vastly within just one month of the transplant,” said Rondelli, who is also the Michael Reese Professor of Hematology in the UIC College of Medicine.
The chemo-free transplant performed by UI is described in a news release:
In the reported trial, the researchers transplanted 13 patients, 17 to 40 years of age, with a stem cell preparation from the blood of a tissue-matched sibling. Healthy sibling donor-candidates and patients were tested for human leukocyte antigen, a set of markers found on cells in the body. Ten of these HLA markers must match between the donor and the recipient for the transplant to have the best chance of evading rejection.
In a further advance of the NIH procedure, physicians at UI Health successfully transplanted two patients with cells from siblings who matched for HLA but had a different blood type.
In all 13 patients, the transplanted cells successfully took up residence in the marrow and produced healthy red blood cells. One patient who failed to follow the post-transplant therapy regimen reverted to the original sickle cell condition.
In Thomas’ case, her sister was a match and following the transplantation she no longer required blood transfusions.
Further research on this type of stem cell transplant is needed, but doctors are hopeful for what early trials show for adults.
“Adults with sickle cell disease can be cured without chemotherapy – the main barrier that has stood in the way for them for so long,” Rondelli said. “Our data provide more support that this therapy is safe and effective and prevents patients from living shortened lives, condemned to pain and progressive complications.”
To learn more about ongoing sickle cell transplant trials at NIH (a participant in a trial will not be charged for a procedure) call 1-800-411-1222 or visit the NIH clinical trials registry at www.clinicaltrials.gov and search under ‘sickle cell disease.”
President Barack Obama speaking at a World AIDS Day event. (EVAN VUCCI/AP)
President Barack Obama has announced a new initiative at the National Institutes of Health in pursuit of a cure for HIV. Obama says his administration is redirecting $100 million into the project to find a new generation of therapies. He said the United States should be at the forefront of discoveries to eliminate HIV or put it into remission without requiring lifelong therapy. Obama made the announcement Monday at a White House event marking World AIDS Day, which was Sunday.
The president also announced that the U.S. passed the ambitious goal he set last year to support 6 million people around the globe in getting access to anti-retroviral drugs. Obama said the U.S. helped 6.7 million people receive life-saving treatment.
Over the past six decades, huge medical advances have sprung from the cells of Henrietta Lacks, a poor, African-American mother of five who died in 1951 of cervical cancer. But Lacks never agreed that the cells from a biopsy before her death taken could be used for research. For years, her own family had no idea that her cells were still alive in petri dishes in scientists’ labs.
They eventually learned they had fueled a line called HeLa cells, which have generated billions of dollars, but they didn’t realize until this spring that her genome had been sequenced and made public for anyone to see.
On Tuesday, the National Institute of Health announced it was, at long last, making good with Lacks’ family. Under a new agreement, Lack’s genome data will be accessible only to those who apply for and are granted permission. And two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to HeLa cells. Additionally, any researcher who uses that data will be asked to include an acknowledgement to the Lacks family in their publications.
The new understanding between the NIH and the Lacks family does not include any financial compensation for the family. The Lacks family hasn’t, and won’t, see a dime of the profits that came from the findings generated by HeLa cells. But this is a moral and ethical victory for a family long excluded from any acknowledgment and involvement in genetic research their matriarch made possible.
It took more than 60 years, but ethics has finally caught up to a particularly fast-moving area of science: taking tissue samples for genetic research. Thanks to the efforts of a dogged journalist, some very thoughtful science leaders in Europe and the U.S., and an ordinary family willing to learn about a complex subject and then to do the right thing to help you and me and our descendants, a long-standing wrong has now been fixed.
NBC Southern California – The National Institutes of Health awarded UCLA a grant to study the genetic causes of autism in African-American children. Areva Martin of the Special Needs Network says “there’s a void” of qualified health care officials to make the diagnosis in communities like South LA. The study hopes to change that, and aims to recruit at least 600 African-American families who have a child diagnosed with autism.