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Obama Seeks Millions for ‘Precision Medicine’

Noah and Alexis Beery

Noah and Alexis Beery benefited from precision medicine. President Obama is asking Congress for $215 million to pay for more of it. Family Photo

President Barack Obama is asking Congress for $215 million to pay for what he’s calling a Precision Medicine Initiative — a plan to rev up more targeted treatments for people.

The hope is to build on gains like those made recently in treating cancer. Scientists know that cancer isn’t just a single disease and it’s become clear that even specific types of cancer, such as breast cancer, are truly separate diseases with separate causes.

The initiative would aim to take these discoveries across medicine.

“It’s a game changer. It holds the potential to revolutionize the way we approach health in this country and, ultimately, around the world,” said Dr. Jo Handelsman, associate director for science at the White House Office of Science and Technology Policy.

"It holds the potential to revolutionize the way we approach health in this country."

“Throughout history, most medical treatments have been designed for the average patient, meaning they can be highly effective for most patients but not others,” she added.

“As a result of this one-size-fits-all-approach, treatments can be very successful for some patients but not for others,” the White House said in a statement.

“This is changing with the emergence of precision medicine, an innovative approach to disease prevention and treatment that takes into account individual differences in people’s genes, environments, and lifestyles.”

Alexis Beery
Even as toddlers it was clear something was wrong with Alexis and Noah Beery of Carlsbad, California. But doctors could not figure out what. Their mother, Retta Beery, said precision medicine could have changed that. Family Photo

Obama’s ask includes $130 million for the National Institutes of Health to develop a database of a million people whose genes, lifestyle and health would be studied and followed for years. Unlike previous such studies, the volunteers could share in learning from and using their data.

Also unusually, their microbiomes would be studied — that’s the collection of bacteria, fungi and viruses that live in and on the body and affect digestion, skin health and may even influence cancer and mental health.

Another $70 million would go to the National Cancer Institute, part of NIH, to scale up research into how DNA is involved in cancer and how it can be used to treat cancer.

Retta Beery of Carlsbad, California, is a big advocate of the plan. She’s convinced that precision medicine could have saved her twins Noah and Alexis from a childhood of misery and near-death.

They were colicky babies, and by the time they were 2 it was clear something was seriously wrong. By 5, Alexis had worsened even more. Doctor after doctor couldn’t help.

“We were looking at wheelchairs. We were talking about feeding tubes,” Beery said. “At end of the day, she couldn’t sit up or swallow. Her body would tremble for hours at a time, her eyes would roll up in her head and you literally couldn’t reach her.” Noah was throwing up every day, but didn’t seem to be as ill.

Cancer breakthroughs offer new hope 3:07

“We were starting to kind of lose her.” They saw a specialist who started Alexis on a drug called levodopa or L-dopa, usually used to treat Parkinson’s disease, and the effects were remarkable.

“We had a completely new life,” Beery said. When Noah started worsening, his feet turning the wrong way and his posture contorting, he started taking the drug and was also, seemingly, cured. He stopped his daily vomiting, too.

But at 14, Alexis regressed. She developed a severe cough that threatened to kill her. “While she’s turning blue, I am driving to the emergency room, wondering if she was even going to make it,” Beery said.

“Our daughter was 14 years of age and we had a baby monitor so we could tell if she was breathing.”

No one could figure out what was wrong. Luckily for the Beerys, Joe Beery, the father, worked for a company called Invitrogen.

“I asked Joe, 'Is there any way that we can pay to have Alexis’s full genome sequenced?’” Retta Beery said.

“Our daughter was 14 years of age and we had a baby monitor so we could tell if she was breathing.”

“This was back in 2009 before it was anywhere near where it is today.”

A team at Baylor College of Medicine in Texas did the sequencing — something that at the time cost tens of thousands of dollars. It turned out both twine had mutations that affected two important brain chemicals — dopamine and serotonin. It explained why the L-dopa worked for a while, but not completely.

“It was the first black-and-white evidence ever of what we were dealing with in Noah and Alexis,” Retta Beery said. “If we had known this from birth, we would have known how to treat them.”

Now both kids are taking pills that regulate their serotonin and dopamine, and they are normal 18-year-olds.

Noah and Alexis Beery
Noah and Alexis Beery were helped by precision medicine, their mom, Retta Beery, says. Family Photo

“They are running track. They are playing sports. If you met them today, you would think they are the most amazing young people. But if they don’t take their medication three times a day they would be in wheelchairs with feeding tubes unable to communicate with you,” Beery said.

“When I say personalized medicine saved their lives, I don’t say that nonchalantly. Alexis would not be here today without whole genome sequencing,” she added.

“We want everybody to be able to use this tool.”

That’s why she’s for the federal funding. Budget cuts have steadily eroded the NIH budget.

“The less funding that we have in this, the less we are going to accomplish,” Beery said. “Scientists are going to start leaving their fields to go to other endeavors.”

And now genome sequencing is a mainstream technology, and an individual can have his or her genome sequenced for around $1,000 — with the price dropping every year. Teams of doctors have reported about several dramatic breakthroughs in diagnosing rare illnesses.

Tailored treatments are within reach, says NIH head Dr. Francis Collins. And it's not just about treating the sick.

"There may be people out there who may have inherited especially good health." Collins told reporters.

They're worth studying, too.