Studies on diseases like ALS, Alzheimer’s, Parkinson’s, and Huntington’s jeopardized if GOP-controlled Congress cuts funding for embryonic stem cell research.
In 2010, when renowned stem cell scientist Lawrence Goldstein, PhD, published his groundbreaking book “Stem Cells for Dummies,” with co-author Meg Schneider, the forecast for human embryonic stem cell research had just begun to brighten.
In 2001, former President George W. Bush cast a cloud over this field of science by barring the National Institutes of Health (NIH) from funding research that used embryonic stem cells beyond the 60 cell lines that already existed.
But in 2009, then-President Barack Obama signed an executive order repealing Bush’s policy.
Obama’s decision enabled researchers like Goldstein, director of the UC San Diego Stem Cell Program, and Sanford Stem Cell Clinical Center, to make real progress, inching closer to human clinical trials.
Goldstein’s work focuses on discovering clinical applications for human embryonic stem cells, also known as ESC.
His work looks specifically at clinical applications for neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS), and Alzheimer’s, Parkinson’s, and Huntington’s diseases.
“After 10 years, we’ve seen a variety of projects that use embryonic stem cells moving closer to clinical applications and in clinical trials,” Goldstein told Healthline.
“Although it’s taken some time, we’re getting closer to seeing the most promising approach for treatment of different neurologic disorders that have no suitable treatment alternative.”
But now use of human embryonic stem cells are once again under fire from conservative and pro-life groups.
Contrary to popular belief, human embryonic stem cells do not come from aborted fetuses.
All the human embryonic stem cell lines currently in use are derived from unused embryos developed for in vitro fertilization and donated for research.
They are cells that would have only been discarded.
Nevertheless, their use in research is opposed by many in the pro-life movement, including a vocal coalition in Congress.
Last month, 41 conservatives in the House urged President Trump to fire Dr. Francis Collins, director of the NIH, the world’s largest agency funding biomedical research, because Collins supports embryonic stem cell research.
However, Trump announced last week he was reappointing Collins, a widely respected physician-geneticist.
Several Republican leaders in Congress had reportedly urged Trump to retain him, calling Collins “the right person, at the right time, to continue to lead the world’s premiere biomedical research agency.”
But Trump’s decision didn’t sit well with many in his voting base and his own cabinet.
Vice President Mike Pence, and Health and Human Services Secretary, Tom Price, have both spoken out against the use of embryonic stem cells on moral grounds.
Just a few weeks ago, Pence got a standing ovation at the National Catholic Prayer Breakfast when he reminded the audience that he was the one who cast the “tie-breaking vote in the United States Senate that allowed states to defund Planned Parenthood.”
The Congressional conservatives who called on Trump to fire Collins are voicing their anger over Trump’s decision to retain Collins.
Rep. Jim Banks, R-Ind., told LifeNews, a pro-life publication, that he was “disappointed” in the Trump Administration’s decision.
“Dr. Collins’ support of embryonic stem cell research, along with his comments that cloned embryos do not deserve the same moral protections as ‘naturally generated embryos,’ make him a less than an ideal fit for a pro-life administration,” Banks said. “I am hopeful that Dr. Collins will turn away from embryo-killing research as he continues his tenure as NIH director.”
Trump’s election has resulted in a new and unprecedentedly tenuous era for the NIH. Its funding has typically had bipartisan support.
Despite Trump’s seemingly pro-science pivot, the NIH still faces a potential $5.8 billion cut — about 18 prevent — in the president’s fiscal 2018 budget.
And this plank from the 2016 GOP platform remains in place:
“We oppose embryonic stem cell research. We oppose federal funding of embryonic stem cell research. We support adult stem cell research and urge the restoration of the national placental stem cell bank created by President George H.W. Bush but abolished by his Democratic successor, President Bill Clinton.”
Goldstein and several other scientists interviewed for this story said that while Trump’s decision to retain Collins is a positive, there’s still no guarantee that embryonic stem cell research will continue getting support from the federal government in this increasingly hostile and volatile political climate.
While human embryonic stem cells are just one of several types of stem cells being studied for their innate, but complex, abilities to treat diseases, Goldstein explained, they are an important weapon in a growing arsenal.
It takes a great deal of time, money, and patience to develop these therapies, he noted.
“It would be a shame to go back to the dark age solution that we had under the Bush administration,” said Goldstein, who is currently focused largely on ALS, also known as Lou Gehrig’s disease, named for the legendary New York Yankee.
Gehrig died from the disease at age 37.
Goldstein said a lot of individuals and institutions are working to find treatments for ALS, which has enjoyed a boost in awareness and funding thanks to the recent “Ice Bucket Challenge” that caught on nationwide.
“It’s important that we develop an aggressive set of cell therapy programs so that we have multiple ‘shots on goal,’” Goldstein said. “We need to attack the disease from as many angles as possible.”
For the last 25 years, Frances Saldaña has been on a mission to increase awareness of Huntington’s disease (HD), a debilitating, incurable, and often inherited disease.
“It’s become my mission in life to advocate for support of HD research and for excellence in patient care,” said Saldaña, whose husband, Hector Portillo, didn’t tell her he had the disease.
Three of their children inherited HD from their father. Both of Saldaña’s daughters have died, and her son is not doing well.
“My son Michael is fighting for his life every single day, but time is running out for him too,” she said. “The suffering endured at the end of life for HD patients is unimaginable. My daughter, Margie, and her husband did not have the money to go through IVF when they started their family. They had two beautiful children. I live in fear that my two grandchildren, now 19 and 21, are also at risk of inheriting HD.”
When Saldaña learned that members of Congress were urging President Trump to fire Collins, her heart sank.
“To have the door close on this research because they have this belief would be tragic,” she said. “In my opinion, an embryonic egg is not life until it’s attached to the placenta.”
Saldaña said that if she had the opportunity, she would ask people who oppose this research, “Have they ever seen their own children dying devastating deaths? Have they ever seen their own children lose the ability to talk, to swallow? Have they ever had their own child die in their arms, and yet know that there is hope, that there is a chance with this research to find a cure?”
“I’ve dedicated my life to supporting this research, from Team Hope walks to bake sales, everything and anything to find a cure,” she said.
Leslie Thompson, PhD, a professor of psychiatry and human behavior, and professor of neurobiology and behavior, at the University of California Irvine, has devoted her entire career to unlocking the mysteries of Huntington’s disease and finding treatments.
Thompson, who said many of her patients with HD are like family, said human embryonic stem cells present great hope for finding a treatment for HD.
And after decades of painstaking study, she told Healthline that her work could lead to human clinical trials for people with HD as soon as two or three years from now.
Thompson keeps a picture of Saldaña’s children in her office to remind her of what her research is really all about.
“I’m deeply concerned how this could move the field backwards,” she said, but added that she is “hopeful” her work and that of others will be allowed to continue.
“We’re in an exciting, unprecedented time of opportunity to use stem cells for treatments,” she said.
When former President George W. Bush decided to halt new human embryonic stem cell research, Saldaña recalled, “We all jumped and went toward getting Prop 71 passed.”
The California Stem Cell Research and Cures Initiative, which was passed by a 60-40 margin, was drafted by the California Institute for Regenerative Medicine. It has provided millions of dollars in stem cell research in the state, including embryonic stem cell research.
The public vote on this initiative has helped California become the national leader in stem cell research.
There is also solidarity in the stem cell community. Even scientists who don’t use human embryonic stem cells still support their colleagues who do.
Jeanne Loring, PhD, a professor of developmental neurobiology, and director of the Center for Regenerative Medicine at the Scripps Research Institute in La Jolla, Calif., made the shift about a decade ago from human embryonic stem cells to induced pluripotent stem cells (IPS), which she makes from cells cultured from skin biopsies.
“There are certain advantages to IPS,” she said, but added that she still fully supports embryonic stem cell research.
“It’s hard to predict what President Trump will do,” said Loring, whose lab is working on finding treatments for Parkinson’s disease, discovering the cause of autism, ways to treat it, and more.
Loring notes that there are great misunderstandings about embryonic stem cell research and where the cells come from.
“There is always an undercurrent of misunderstanding about sources of human stem cells. People think they are associated with abortion but they are not.” she said.
What lies ahead for human embryonic stem cell research is anyone’s guess.
When Obama signed the order to lift Bush’s ban on new embryonic stem cell research, he said, “In recent years, when it comes to stem cell research, rather than furthering discovery, our government has forced what I believe is a false choice between sound science and moral values.”
“In this case, I believe the two are not inconsistent. As a person of faith, I believe we are called to care for each other and work to ease human suffering. I believe we have been given the capacity and will to pursue this research — and the humanity and conscience to do so responsibly.”
Goldstein said he hopes Trump, too, will embrace the importance of this research that seeks to find treatments for deadly diseases.
“It’s early in this administration, there is still time for them to staff up with people who will give the President the appropriate scientific advice,” Goldstein said. “There are many challenges facing us that are technological in nature. You can’t have a humming economy without robust investment in science. It drives the development of new technologies and devices. An investment in science pays far more than what you put in.”
Goldstein said investing heavily in science has helped give the United States the quality of life that Americans now enjoy.
“Our investments in science and technology are likely the reason for winning World War II,” he said. “And our investment in biotech has revolutionized medicine and has been invaluable to providing jobs in many states.”