The Trump administration announced plans to set up an Ebola quarantine and treatment center in Kenya for Americans exposed to the deadly virus overseas. Secretary of State Marco Rubio is now saying no Ebola patients will be allowed into the U.S. Mark Strassmann reports.

A cancer doctor in Allentown, Pennsylvania, is marking breast cancer awareness month by wearing a different kind of pink for each of the 31 days in October, and it’s more than a fashion statement.

Advocates say the color pink is linked to breast cancer because it symbolizes femininity, care, and solidarity.

Dr. Lori Alfonse at Lehigh Valley Topper Cancer Institute, part of Jefferson Health, has a lot of snazzy pink shoes.

“Each shoe has its own personality, its own shade, its own fabric and those are personality traits that are very similar to my patients,” Alfonse said. 

In honor of her patients, the surgical oncologist is wearing a different pair of pink shoes each day for October.

“I started out getting just enough for 31, and now I’m up to well over 72 pairs of just pink shoes. So I can wear more than one in a day,” she said. “You have 71 pairs of pink shoes. I do. I have a lot of other reasonably colored shoes too.”

This shoe connoisseur says there’s a serious side to her pink passion, a message of strength and survival.

“Breast cancer is not a death sentence. It is two words that represent many different types of cancers as individual as our personalities,” she said. “We have gotten very, very good at treating breast cancer. We still have a lot of work to do. But the vast majority of our treatments are tolerable. They are successful.”

Alfonse sported a light pink boot on Friday while seeing patients, always reminding them about the importance of mammograms for early detection.

She says patients look forward to her pink shoe show; it’s a special connection she has with them.

Dr. Alfonse says pink for breast cancer has a special place in her heart; her mom, grandmother, and great-grandmother all had the disease.

They might easily be mistaken for Congressional staffers, reluctant to face the day, but these are among the most accomplished cancer specialists in the country, meeting with Representatives, Senators and staff. Among them: Dr. Elizabeth Jaffee, deputy director of the Johns Hopkins Kimmel Cancer Center, from up the road in Baltimore; and Dr. George Weiner, a cancer specialist in Iowa for more than 35 years, who has flown in frequently to lobby Congress for more research funds.

Lobbying for cancer research, he says, used to be like pushing on an open door. “Most of the time when I’ve come, I’ve met with Democrats and Republicans, and we talked about the bipartisan support for cancer research,” Weiner said. “This is the first time that I felt there was an existential crisis in our ability to make the type of progress that I see in front of us.”

These days, the conversation is all about thousands of layoffs … delays in research … massive budget cuts – close to a 40% proposed cut in funding for the National Cancer Institute.

“I wake up every morning looking at my phone: Did I get an email from the National Cancer Institute saying I’m no longer receiving my grants?” said Jaffee.

Has she felt the impact yet? “Oh, yeah, we certainly have felt the impact, to the point where people are leaving,” Jaffee replied. “So, in our clinical research operation, which takes years to build, train research nurses, takes two years to train coordinators, takes six to 12 months, these people are leaving because the funding isn’t coming in.”

I asked, “If they keep cutting back, how long before Dr. Jaffee says, ‘That’s it’?”

“I have to be honest, there are days when I do feel that,” she replied. “But I look around and I feel like I would be disloyal to our patients. We are in a technological revolution in cancer research. We are rapidly making discoveries that we couldn’t even do ten years ago.”

“What price do you put on life?”

Kevin Callahan was a Marine in Vietnam when he barely survived stepping on a land mine. Decades later, he was diagnosed with a killer disease: pancreatic cancer. First came surgery and chemo. Now, he’s part of a clinical trial, which is where Dr. Jaffee and her colleague Dr. Neeha Zaidi come in, working to develop a vaccine to prevent pancreatic cancer from recurring.

I asked Callahan, “When you see some of the debates that are going on right now, and it relates to the National Cancer Institute and NIH …”

“It raises the hair on the back of my neck,” he replied.

Beth Callahan wasn’t all that sure about the clinical trial at first, but Kevin couldn’t stop thinking about all that had gone into it – getting chemotherapy as an approved treatment. “They would shoot me up with three drugs, and the fourth one I would go home with a little bag on my chest, and it wouldn’t come out until Friday. It had to be done over 40 hours. I thought to myself, ‘How many poor bastards went through tests to get that done?’ So I thought, ‘If there’s anything that I can do, I’m more than happy to go in with the study and see if I can help somebody else later on, [to] develop this vaccine.'”

Pancreatic cancer is particularly nasty, even when, as with Kevin, it’s detected early. The experimental vaccine they’ve been administering to him is promising, but according to Jaffee, the chances of recurrence are 80%, and the chances of a patient being alive in five years is 20%.

Yet, Kevin is four-and-a-half years out, without recurrence, “part of a small cohort of patients who received the vaccine on that trial who are, like him, doing well without recurrence,” Jaffee said.

I asked, “Could it be anything other than the vaccine?

Jaffee replied, “We don’t believe so. This is not a cancer where sometimes it looks less aggressive than other times. This is a cancer that uniformly – it doesn’t matter who you are – it comes back.”

And so far, it has not. Kevin says, “Bottom line, I’m cancer free.”

Now the Callahans are concerned the cuts at the NIH could interfere with – or even stop – Kevin’s vaccine trial.

I said, “They claim that they’re not cutting back on any of the science, on any of the people who are really doing the research.”

“I don’t believe that for a minute,” said Kevin.

Asked if it is worth the money invested by taxpayers, Beth responded: “What price do you put on life? It’s our lives. It’s our children’s lives. It’s our grandchildren’s lives. What price do you put on that? We’re not just talking about cutting funding to individual research programs. We’re talking about NIH, which is a gift that we have had in this country for decades. Why would we give that up as a country?”

Located just outside of Washington, D.C., the National Cancer Institute is the crown jewel of the National Institutes of Health. It is also the most expensive. Its budget last year was $7 billion.

Dr. Weiner noted, “Mary Lasker, who was a brilliant woman and a force of nature who worked with Richard Nixon on the original war on cancer, would say, ‘If you think research is expensive, try disease.'”

The Trump administration is proposing cutting that $7 billion cancer budget down to about $4.5 billion. Weiner thinks that America’s widely-recognized position as the world’s leader in medical research is at a tipping point. “Progress is gonna be proportional to investment,” he said. “So, progress is not gonna totally stop if funding drops dramatically. But the more it drops and the longer it drops, the slower progress will be.

“But that’s not the case for patients,” he said. “Our job as researchers is to bring those advances to help those patients as soon as possible, because those patients can’t wait.”

That would describe Natalie Phelps’ dilemma to a T.

“When is cancer political?

Natalie Phelps has Stage 4 metastatic colorectal cancer.  She and her husband, Jeff, live out in Washington State.

“We have one boy, one girl, and a giant German Shepherd, very average American,” she said. “And I had always hoped, if I needed a clinical trial, I was like, ‘I’m gonna get to the NIH. I’m gonna go to the top place in the world.'”

Phelps was invited to NIH for testing to determine if she qualified for a promising breakthrough immunotherapy treatment that has shrunk tumors in about a quarter of the patients with gastrointestinal cancers.  She said, “When I was invited to go back, I had cancer patients congratulating me. They were like, ‘You made it!’ It’s like making it into the Olympics when you’re a cancer patient.”

The clinical trial is run by Dr. Steven Rosenberg, a legend in the field of cancer research who is still practicing in his mid-eighties. “Well, she’s a young woman with a metastatic cancer, and so that’s a desperate situation. Every patient we see here at the National Cancer Institute has been through all standard treatments that haven’t worked. And they come here to the NIH, the National Institutes of Health, of Hope, trying to see if some experimental treatments might be of help to them.”

In late May, Natalie Phelps finally qualified for Rosenberg’s clinical trial. But budget cuts at NIH had already slowed the trial down. NIH has lost about 1,500 employees.

“We did lose two technicians that are involved in producing the materials that are used to treat patients,” Rosenberg said.

“And would that cause a significant delay?” I asked. “When I say ‘significant,’ I mean in Natalie’s case she feels that it has been delayed by a month. Is that correct?”

“That’s correct.”

“A month could be critical for her.”

“It certainly can when you have metastatic cancer that’s growing,” Rosenberg said.

That one-month delay means Natalie’s specialized immune cell therapy won’t be ready until late July. I said to her, “I don’t even know what seems like an appropriate question. You must be devastated.”

“Well, yeah, Ted,” she replied. “I was diagnosed in 2020 during COVID, after giving birth to my second child. And I had to spend the first bit of my child’s life changing diapers and doing bottles with the chemotherapy pump attached to me. I’ve done 48 rounds of chemotherapy. I’ve had multiple aggressive surgeries and radiation. And I have been in treatment for five years, hoping that I can raise her, but at the very least let her have a memory of who her mother was.  

“I have endured so much, and now I have another hurdle just because of funding cuts?” she said. “I mean, my husband and I can’t believe it. When is cancer political?”

In a recent online statement, NIH Director Jay Bhattacharya pushed back on concerns about budget cuts and employee layoffs. He said, “As to the current re-organization, no clinical trial has been delayed, nor has any participant been dropped from any clinical trial…”

Natalie Phelps is just one patient, one case out of many; but her participation in a clinical trial was delayed, because two specialized technicians were let go.

And that delay has proved to be devastating. She sent us a video message a couple of days ago from NIH: 

“I got my test results back today and I didn’t pass,” she said. “I have several new brain tumors, and it’s not safe for me to participate in the trial. The earliest I could get back here for treatment would be about six weeks after having the tumors radiated, provided that the radiation’s successful. I don’t know. It’s a long time.”

As for the budget cuts that caused the layoffs that produced the delay, it probably won’t help much to learn that they were nothing personal.

       
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Story produced by Deirdre Cohen. Editor: Ed Givnish. 

     
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On a quiet plot of land in rural New Mexico, Jeff Deming feels like he’s really living, once again.

“Mentally, it’s day and night,” he said.

He’s able to do the things that make him happy, like woodworking, despite living with Parkinson’s Disease.

“Physically, I feel better than I did 2-3 years ago,” he said.

Deming credits the treatment he received during a first-of-its-kind clinical study he participated in at the University of California, San Francisco: Psilocybin therapy for people with Parkinson’s Disease.

“This is very cliché, but it truly gave me my life back,” he said.

Psilocybin is a naturally occurring psychedelic compound found in ‘magic mushrooms.’ When administered in controlled, clinical research settings, it has shown promise in treating depression and anxiety, both of which are mood symptoms associated with Parkinson’s that are linked to a faster physical decline.

“The neurodegeneration that is happening isn’t just impacting motor circuitry – it’s impacting a lot of brain circuitry. That creates this huge burden of symptoms that we often overlook and don’t talk about enough, maybe,” said Dr. Ellen Bradley, of UCSF. “We were really surprised by how well this trial went.”

Bradley and a team of researchers at UCSF are trying to figure out how Psilocybin may help treat mood dysfunction and more in those living with the neurodegenerative disease.

“This is a first step, and now we’ve opened the door to being able to really investigate the effects of Psilocybin for people with Parkinson’s,” she said.

12 patients participated in this first-round study, which involved a first and second course of Psilocybin treatment.

“We had folks do a lower dose of Psilocybin – a 10 mg dose initially – and monitored them for a couple of weeks to see how that went,” Bradley said. “If it did go well, if we didn’t have safety concerns, then they were eligible for the full therapeutic dose of 25 mg.”

All 12 patients were able to complete both courses of treatment without reporting any serious side effects, according to Bradley.

“We want to find out not just does Psilocybin therapy work, but if it does, how does it work? That mechanistic piece is so important,” she said. “Can it change the brain’s ability to adapt to its environment and to rewire itself?”

While there were no serious adverse effects reported, every patient didn’t have the same life-changing experience as Deming says he experienced. Though many did report their motor and cognitive functions improved afterwards, per Bradley.

“We don’t have a reason to believe that this is a treatment that is going to be a good fit for every patient. That is never really our expectation in medicine. But our goal is to figure out when is it the right treatment and how much for which patient,” Bradley said.

Bradley says her team is scaling up their work and are in the process of recruiting for a larger study, due to the success with the initial research.

“That was really exciting just to see that promising safety profile in this initial pilot. That kind of gives us a green light to go forward with more in-depth research,” she said. “We really desperately need new treatments for Parkinson’s. It’s a very quickly growing disease that’s becoming more and more prevalent in our population, so, we really feel like we have to be investigating every possible route that could mean new treatments for patients.”

Two years removed from his controlled Psilocybin dosing, Deming says he feels better now than he did when he received his initial diagnosis four years ago.

“Something about this experience just freed everything back up so I could think again, I could dream again,” he said.

He’d like to see more research into psychedelic therapies for a range of conditions, with the hopes that more people will be able to reclaim the reins of life, as he has.

“There’s been such a stigma against the research with it,” he said. “It is definitely worth looking more closely at.”