Wednesday was a very sad day for people in the HD community as well as millions of other people plagued with neurodegenerative diseases such as Alzheimer's, Parkinson's Disease, ALS and more.
During the Bush years, research and innovation in the medical research field was sharply curtailed by a ban on creating new stem cell lines. For eight years research was held back by this ban on an emerging technology which may release the secrets to curing diseases such as Huntington's Disease to blindness.
During the Obama years, the ban was lifted and research surged forward.
However, Wednesday, June 5, 2019, the Trump administration abruptly reduced or ended any federal spending on research that uses fetal tissue in its experiments. According to The New York Times, the administration has ended any such research within the National Institutes of Health and has already effectively ended a $2 million per year funding contract with The University of California, San Francisco.
The Regenerative Medicine Foundation posted a statement from Sam Hawgood, the chancellor of the University of California, San Francisco on their Facebook page, “The ban on fetal tissue research is akin to a ban on hope for millions of Americans suffering from life threatening and debilitating diseases."
Dr. Herwig Lange, Senior Medical Advisor of WeHaveAFace.org said in a statement: "A drastic cut in funding of fetal cell research will slow down research progress, including HD treatment. On the other hand, if the money saved will be used for the search for alternatives, it's a good thing."
However, the scientific community is coming out and suggesting there may not be satisfactory alternatives.
According to The New York Times: As of last year, the N.I.H. spent about $100 million of its $37 billion annual budget on research projects involving fetal tissue. The tissue is used to test drugs, develop vaccines and study cancer, AIDS, Parkinson’s disease, birth defects, blindness and other disorders. For much of that work, scientists say there is no substitute for fetal tissue. “Claims that other cells can be used to replace fetal tissue in biomedical research are patently incorrect,” dozens of scientific and medical groups wrote in a letter to Mr. Azar in December. “While there have been some advances in recent years that have reduced the need for fetal tissue in certain areas of research, it remains critically important in many other areas."
WeHaveAFace has historically supported research for Huntington's Disease and Juvenile Huntington's Disease at University of California, Davis.
Dr. Jan Nolta, the director of the stem cell program at the UC Davis School of Medicine and Institute for Regenerative Cures, as well as Scientific Director for the UC Davis Good Manufacturing Practice and editor of the journal Stem Cells clarified via Facebook messenger that the research being done at UC Davis in regards to Huntington's Disease "does not use fetal tissue". Therefore they would be unaffected by the ban.
After looking into the matter, Dr. Herwig Lange concluded : "As far as i have understood, not affected by Trump's order are 200 government-sponsored, external projects involving fetal tissue - such as at other universities. Even private institutes could continue their research without any restrictions. In the future, however, it will be strictly examined in which cases government will fund projects. There should be a search for alternatives to fetal tissue. The government cited ethical reasons for its decision, but did not elaborate."