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Minibrains hold tremendous potential for unraveling the mysteries around neurological diseases, but scientists worry about creating a sentient entity in the lab. In other public health news: tuberculosis; medical research; medication to save children from pneumonia, malaria and other diseases; the immune system; and more.
The CDC and the Food and Drug Administration say the Yuma, Ariz., growing region is the source, but no farm has been identified.
The chance immunotherapy will help some patients is small — but not zero. “Under rules of desperation oncology, you engage in a different kind of oncology than the rational guideline thought,” says Dr. Oliver Sartor. Other doctors won’t even bring up the treatment though, arguing that scientists first must gather rigorous evidence about the benefits and pitfalls.
Seven governors announce that their states will form an “unprecedented” consortium to tap into resources at universities and state agencies to help build up research on gun violence.
Murky state regulations, patients desperate for medication who deceive doctors about their symptoms, and state-level infectious disease agencies and public health departments that have made clear they don’t accept certain information by email are just some of the problems these new startups face.
But the International Brotherhood of Teamsters, which has accused the pharmaceutical wholesaler of exacerbating the opioid epidemic, is dismissing the company’s internal investigation findings. In other news on the crisis: Democrats are concerned lawmakers are moving too quickly on bipartisan opioid package; common pain relievers are found to be safer than opioids for controlling dental pain; the FDA concludes a painkiller that’s had a bad reputation for more than a decade is actually safer than previously thought; and more.
Roll Call takes a look at all that’s in store for the program in the upcoming months. Medicaid news comes out of Idaho, New Hampshire and New York, as well.
Today’s early morning highlights from the major news organizations.
After Keith Beck died of bile duct cancer last year, family members said more than 900 people showed up to pay respects to the popular athletic director at the University of Findlay in northwestern Ohio.
Many were former students who recalled acts of kindness during Beck’s nearly 30-year career: $20 given to a kid who was broke, textbooks bought for a student whose parents were going through bankruptcy, a spot cleared to sleep on Beck’s living room floor.
But few knew about Beck’s final gesture of generosity. The 59-year-old had agreed to a “rapid autopsy,” a procedure conducted within hours of his death on March 28, 2017, so that scientists could learn as much as possible from the cancer that killed him.
“He was 100 percent for it,” recalled his ex-wife, Nancy Beck, 63, who cared for Beck at the end of his life. “It wasn’t the easiest thing to do, but it was important.”
Beck donated his body to a rapid-autopsy research study at the Ohio State University, part of a small but growing effort by more than a dozen medical centers nationwide. The idea is to obtain tumor tissue immediately after death — before it has a chance to degrade. Scientists say such samples are the key to understanding the genetics of cancers that spread through the body, thwarting efforts to cure them.
“People are recognizing that cancer is more heterogeneous than we realize,” said Dr. Sameek Roychowdhury, a medical scientist at OSU’s Comprehensive Cancer Center. “Different parts of your body may have different cancer cells, even though they originated from the same cancer.”
In Beck’s case, results from the rapid autopsy showed he had developed a mutation that caused the experimental drug he was taking, known as an FGFR inhibitor, to stop working. Roychowdhury and colleagues plan to report on Beck’s case in an upcoming paper.
“This is helping us shape how we develop this new drug,” Roychowdhury said. “How can we make a better drug? Or can we make a better drug combination?”
Rapid-autopsy technology has been available for decades. Researchers at the University of Washington in Seattle have been using the technique to study prostate cancer since 1991. Scientists at the University of Nebraska Medical Center launched a now-robust program in 2000.
But only in recent years have more hospitals been launching and expanding programs, said Dr. Jody Hooper, director of the Legacy Gift Rapid Autopsy Program at Johns Hopkins Medicine in Baltimore. At last count, there were 14 similar programs in the U.S.
Funding for them varies, Hooper said, but typically they’re supported by a mix of cancer program resources, grants and researcher fees.
Scientists recognize the value of examining tissue from multiple sites soon after death and obtaining larger samples than they could while a patient was living. Cancer cells can be retrieved during such autopsies and kept alive, allowing researchers to experiment with ways to treat — or kill — them.
“It’s the power of sampling over the entire body at the same time,” said Hooper, who conducts about one rapid autopsy a month, often providing tissue for up to a half-dozen researchers interested in different questions.
Most programs focus on cancer, but efforts are underway to expand the practice, possibly to shed light on virus reservoirs in HIV patients, for instance.
Speed is essential to preserve RNA and DNA, the building blocks of cells, which can degrade quickly after death. It’s best to obtain specimens of living cells within six hours of death and other tissue within 12 hours, Hooper said.
The need for speed is also what makes such autopsies challenging. Families must consent to the procedure, often while freshly grieving their loved one’s death. And the logistics surrounding retrieving a body, conducting an autopsy and then returning the body for a funeral are often complicated. Traffic is unpredictable and “one time, there was a blizzard,” Hooper said.
Roychowdhury said he and one of his clinical fellows are on call at all times.
“The patients have our cellphone numbers, as well as the next of kin,” he said.
Broaching the subject with patients and families requires tact and compassion. Most patients are enrolled in clinical trials and learn about the autopsies from their doctors or pathologists like Hooper. Many are willing, even eager, to cooperate, she said.
“These are mostly patients with metastatic cancer,” she said. “They’ve made their peace with the outcome long before.”
For some, the rapid autopsy is simply the final phase of the clinical trial.
“They want to do something not only for themselves, but also to help others,” Roychowdhury said.
That’s how Linda Boyed, 52, of Lewis Center, Ohio, sees it. Like Beck, she has bile duct cancer and is enrolled in a trial to treat it. The drugs are working now, but Boyed said she has agreed to a rapid autopsy after death so scientists can learn from her when they’re no longer effective.
“I have a strong Christian faith,” she said. “I believe we’re put on this Earth to help each other.”
Because the rapid autopsies are paid through program funds and grants, there’s no cost to the families. Bodies are returned within a day and in a condition that doesn’t affect funeral plans.
“My emphasis is that it was all done with dignity and respect,” said Nancy Beck. “We felt honored to be able to do this.”
Performing the autopsy after treating a patient in life is an honor for doctors, too, Roychowdhury said.
“This was once a living, breathing person that came into my office every other week,” he said. “The thing I want to think about each day is that they’ve given so much so that others can benefit.
“Everyone has something to teach us after death.”
When a routine physical revealed mildly elevated blood-sugar levels, Michael Phillips was strongly encouraged to sign up for a diabetes self-management class.
Phillips never asked about the cost of the two half-day sessions he attended in a conference room at St. Mary’s Hospital in Athens, Ga., and doesn’t recall the instructor mentioning it.
But the 64-year-old retired bank analyst was flabbergasted when he opened his bill after attending.
“What, $1,044 for a class?” said Phillips, who fought the bill with the hospital and his insurer, Blue Cross Blue Shield of Georgia. “The hospital is charging an exorbitant rate, but BCBS is going along with it — why aren’t they screaming about being gouged?”
There are about 1.5 million Americans newly diagnosed with Type 2 diabetes each year. Unlike Type 1 diabetes, an autoimmune disease in which people produce no insulin that begins in childhood, Type 2 diabetes is a condition of adulthood, typically associated with weight and a sedentary lifestyle.
Diabetes self-management programs teach patients how to monitor their blood sugars, what to eat and the importance of exercise as strategies to delay or avoid the disease’s serious complications.
Patients like Phillips, with early or mild diabetes, can modify their habits so that their blood sugar returns to normal.
But the classes, targeting a disease that affects 30 million Americans, have also become a revenue generator for hospitals and an opportunity for marketing and branding.
“If you can get 25 in the class and charge $500 each, you can make a lot of money,” said Gerard Anderson, a professor of health policy and management Johns Hopkins University Bloomberg School Public Health. An additional incentive is that the classes bring “people into the hospital that they expect will need the hospital in the future.”
Phillips’ class had about a dozen students, who got a free lunch, free parking and a sample of Glucerna, a nutrition drink formulated for diabetics. The instructor noted that St. Mary’s operates a gym that participants could join for a fee.
Diabetes is among the costliest of medical conditions. The American Diabetes Association estimates that average medical expenditures for those diagnosed with diabetes are 2.3 times higher than those without.
The classes, say experts, are a chance to rein in some of that spending. When Harvard Law School researchers ran the numbers in 2015, they found an estimated savings of $1,309 over three years for every Medicare Advantage patient who completed an education program.
But for many patients, the cost of the classes can either become a barrier to actually attending, or leave them with unanticipated bills.
After St. Mary’s billed Phillips’ insurer $1,044 for the two half-day classes he attended, Blue Cross Blue Shield of Georgia, in turn, lowered that to $626, or the “allowed amount” it had negotiated with St. Mary’s. Because he had not yet met his $3,500 annual deductible, Phillips is responsible for the entire $626.
Phillips, who took early retirement from his job in 2005 to care for his elderly parents, said he likely would not have attended had he known the price. He’d expected the instruction to cost about $50, noting that he’d already paid $120 for a one-on-one session with one of the hospital’s certified diabetes educators or CDEs.
Medicare sets an average reimbursement of $356 for an entire nine-hour group course, with the beneficiary’s share of that amount estimated at $71.
St. Mary’s said it is proud of its fully accredited program, which helps diabetes patients manage their condition.
“Our charges are in line with other similarly recognized programs in the state,” according to a written statement from Mark Ralston, public relations director for the St. Mary’s Health Care System.
“Prior to enrollment, we send patients a letter that includes information that there will be a charge,” the statement said, noting that the amount “the patient will pay depends on the patient’s insurance coverage.”
Ralston also noted that, because St. Mary’s is a Catholic health care system, “we are always happy to work with patients who have financial difficulties, up to and including applications for charity care.”
Phillips’ charges seem high even though they were for a program that might actually save the insurer money over the long term, said William Custer, who studies health care markets as the director of the Center for Health Services Research at Georgia State University.
He questioned why the insurer didn’t drive a harder bargain.
“If the course has a benefit in terms of increasing health and reducing utilization, Blue Cross has an incentive to cover it and an incentive to negotiate,” said Custer.
Blue Cross is one of the state and the region’s major insurers, Custer said, so it should have negotiated a better price.
Colin Manning, a spokesman for the insurer said, “We do have questions about the amount charged for this class and we are reaching out to St. Mary’s Hospital to discuss reimbursement for this service.”
Diabetes management courses vary considerably in length and format, and even more so in price.
Internet searches and phone calls uncovered some cost examples, ranging from a $396, nine-hour course in Ohio to one in Wisconsin that lasted six hours and had a $420 price.
One of the most expensive — a 7½-hour diabetes self-management group course that included two-hour individual sessions with a dietitian and a diabetes educator — cost $1,700 in Washington state.
Howard County General Hospital in Maryland has decided to bypass insurance and charge patients $50 upfront for a six-hour course taught by a certified diabetes educator. That price was selected because in many cases it was less than what people with insurance would pay in copayments or deductibles under the former price, which was billed to insurers at a rate of about $1,000.
Before they made the switch about a year and a half ago, patients would often cancel after learning how much they would owe, said Mike Taylor, a clinical manager and diabetes educator who runs the hospitals program. “We would literally lose half the appointments we would schedule.”
The Maryland hospital also offers free classes by a lay instructor.
Meanwhile, thinking his original bill was in error, Phillips in late January appealed St. Mary’s $1,044 charge to his insurer. It was denied a month later as the insurer noted the bill was “coded correctly.” Hospitals can charge what they like for their services.
And after being contacted by the hospital billing office in early April to confirm he was aware of his bill’s “delinquent status,” he wrote a second appeal letter.
Phillips said the class was well-taught, though he noted that he was already dieting before he took the class. He “followed what they said” and he has lost 31 pounds. His blood sugar, he added, is also back in the normal range.
“At least now I’m well-informed about what to eat and not eat if I ever do have diabetes,” he said wryly.
Methadone and buprenorphine are the two most popular options. But many California communities, particularly rural ones, have neither a methadone clinic nor a doctor who can prescribe buprenorphine.
More than 2,000 Californians died of opioid overdoses in 2016. About 12 percent of those deaths involved fentanyl, a deadly synthetic opioid painkiller that is 30 to 50 times more powerful than heroin.
On Tuesday, California Healthline columnist Emily Bazar and contributor Brian Rinker discussed the medications used to treat opioid addiction and the challenges of getting access to them. Among those challenges: Doctors must undergo eight hours of training before they can prescribe buprenorphine. Even then, they face limits on the number of patients they can treat.
To watch the discussion, which was recorded live, click on the video above.
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Meanwhile in Delaware, the state Senate sent gun-control legislation to Gov. John Carney (D) for his approval. Six states have already passed similar “red flag” laws following the mass shooting in Parkland, Florida.
In the stockpile outside D.C. and in several other places across the country there are rows of antibiotics, including the powerful medication Ciprofloxacin, vaccines for smallpox and anthrax and antivirals for a deadly influenza pandemic. In other public health news: stem cell therapy, kidney disease, broken heart syndrome, rapid-aging disease, and more.
Over the past five years, the rate of recidivism for those on conditional release in Oregon after a verdict of criminal insanity is 0.47 percent. By comparison, one report put the recidivism rate among all Oregon ex-inmates, whether mentally ill or not, at about 18 percent.
Dr. Jeffrey Veale is the first surgeon focused on making the re-use of transplanted kidneys routine. “We shouldn’t be discarding these young, healthy kidneys,” he says. In other news, the United Network for Organ Sharing, which has held a tight rein on organ donation in the United States, may be facing competition.
Florida has been on the watchlist of states that may expand Medicaid if a Democrat or amenable Republican wins the gubernatorial race. Republican Gov. Rick Scott rejected Medicaid expansion in 2015. Medicaid news comes out of Kansas and Rhode Island, as well.
Dr. Ronny Jackson has been accused of overseeing a hostile work environment where staff had to “walk on eggshells” around him, drinking while on overseas trips and then banging on a female employee’s hotel door, and doling out prescription medications with such frequency as to earn the moniker “the candy man.”