How an obscure medical technology caught the eye of Joe Biden. And John Grisham

first_imgHealthHow an obscure medical technology caught the eye of Joe Biden. And John Grisham Dr. Neal Kassell has been promoting the obscure medical technique of focused ultrasound for a decade. Matt Eich for STAT Leave this field empty if you’re human: Independent experts and physicians say that although it’s still largely unproven, focused ultrasound has real promise and should be studied further.“Will it replace surgery? Probably never. But the benefits of being able to treat someone without actually cutting into their body certainly appeal to a lot of people,” said Daniel Merton, who evaluates new medical technologies for the health care research organization ECRI Institute.Despite their optimism, experts are careful to point out the technology’s limitations: It often doesn’t work on large tumors, or those that are in difficult-to-reach places. Patients risk painful burns or damage to healthy tissue. The equipment is extremely costly. And the long-term benefits for patients are as yet uncertain.Kassell’s foundation is also careful not to oversell the technology’s potential.In his book “The Tumor: A Non-Legal Thriller,” Grisham — who sits on the foundation’s board — imagines a future in which focused ultrasound treatment is widely available. The protagonist, Paul, is able to extend his life by more than seven years after being diagnosed with a deadly brain tumor, thanks to three rounds of focused ultrasound treatment. The projected cost: About $75,000, a quarter of the cost of the treatments Paul would get today.But not even Grisham dares to dream that the technology can cure his hero. Paul’s brain tumor kills him eventually.Physicians and researchers can monitor patients undergoing treatment at the University of Virginia’s Focused Ultrasound Center. Matt Eich for STATA ‘eureka’ momentKassell first stumbled upon therapeutic ultrasound more than a decade ago, when he was searching for a way to treat hard-to-reach brain tumors.In the clinic, he had recently started using ultrasound to burst tiny bubbles injected into the bloodstream to measure blood flow in the brain. A eureka moment hit him in the car one day: Ultrasound might be able to treat brain tumors, too.He realized when he got home and started scouring the scientific literature that he wasn’t the first person to have this idea. He read all the research he could find on the technology and met with a leading manufacturer of the equipment. He now thinks hundreds of thousands of people could eventually be treated annually. Privacy Policy The call didn’t come out of the blue for Dr. Neal Kassell. The University of Virginia professor performed two brain surgeries on Biden to repair aneurysms in 1988. A lifelong Republican, Kassell has maintained a friendship with Biden in the years since.They’ve talked about the therapeutic power of high-frequency sound beams, and a Biden aide even attended a recent workshop put on by Kassell’s Focused Ultrasound Foundation, according to Biden spokeswoman Meghan Dubyak.advertisement Kassell — married with three grown daughters, three stepchildren, and six grandchildren — is smart, loyal, and charming, his friends and scientific collaborators say. It’s a personality, they say, that makes him a natural and credible salesman for a medical technology in need of an evangelist.It certainly helps that Kassell is well-connected in the social circles of high-society Virginia — and on bigger stages, too. His foundation’s board members include a former FDA commissioner, a former CEO of Johns Hopkins Medicine, and a former CFO of Citigroup.Last year alone, the foundation spent $3.1 million funding research, primarily targeting the technology’s potential application in the brain.Kassell’s goal for his foundation is that it will put itself out of business, in about a decade, by advancing the field to a point where an advocacy organization is no longer needed.“When you go to these philanthropic meetings, they talk about how to make your organization sustainable. We say, ‘Why don’t you talk about how to make it not sustainable?’” Kassell said. “My immediate reaction was ‘Holy cow.’ But I would never bet against Neal.” Now, the technology — as expensive and limited as it is — “is one of the cutting-edge therapies that the VP is exploring through the moonshot,” Dubyak said.Kassell believes focused ultrasound has the potential to “play a real role” in advancing the moonshot’s goals, such as by boosting the effects of cancer immunotherapy or delivering chemotherapy in a more targeted manner. He believes it could treat many types of cancer, as well as other diseases like Parkinson’s and perhaps even Alzheimer’s.“The problem,” Kassell said, “is that most people have never heard of focused ultrasound. So we need to get that visible.”He’s been working on just that.Indefatigable at 70, Kassell — pronounced kah-SELL — talks slowly, in a deep voice that initially disguises his frequent deadpan jokes. He’s candid about the frustrations of advocacy and fundraising. He speaks with unvarnished impatience about too much red tape at organizations like the March of Dimes (“a self-perpetuating bureaucracy”) and the University of Virginia (which he jabs for “fiddling around”).He’s such a persuasive evangelist for focused ultrasound that he inspired best-selling legal novelist John Grisham — a personal friend — to write a book championing the technology’s potential, over the concerns of his publishers. It’s been ordered or downloaded more than 250,000 times since coming out in December. Newsletters Sign up for Daily Recap A roundup of STAT’s top stories of the day. Dan Jordan, member of Focused Ultrasound Foundation board Panel of experts named to advise Biden on cancer ‘moonshot’ As Johns Hopkins launches new cancer center, Biden sees a model for his ‘moonshot’ center_img “You can’t walk away from that sort of responsibility,” Kassell said. “The opportunity to be involved in a true revolution in therapy that can affect so many people — that’s a once-in-a-lifetime thing.”His friends weren’t so sure: Some wondered why he’d shift so much of his time and energy toward an obscure and unproven medical device.“My immediate reaction was ‘Holy cow,’” said Kassell’s longtime friend Dan Jordan, a former president of the Thomas Jefferson Foundation who now consults for nonprofits and sits on the board of Kassell’s foundation. “But I would never bet against Neal.” Related: “To be involved in this is a sort of moral imperative.” Please enter a valid email address. CHARLOTTESVILLE, Va. — An obscure medical technique involving zapping a body part with converging beams of sound is finally getting some high-profile attention.Focused ultrasound, as the procedure is known, is used commercially in the United States to treat just a few medical conditions, including uterine fibroids and prostate cancer. Just over two dozen hospitals and clinics across the country offer it. Hardly any insurers will pay for it.But an irreverent, impatient, retired neurosurgeon has made it his mission to accelerate development of the treatment — and this week, he got an opportunity to do that in a big way when he was named to a panel advising Vice President Joe Biden on the national cancer moonshot initiative.advertisement Related: Kassell has also raised about $70 million over the past decade for his Focused Ultrasound Foundation — which is believed to be the only health charity dedicated to promoting a specific medical device. (Manufacturers of focused ultrasound machines have donated modest sums in the past, though not last year, mostly to support the foundation’s biannual research symposium.)Kassell turns earnest when he talks about the millions of people he believes could potentially benefit from the treatment. They’re not just hypothetical patients to him: About a decade ago, his son-in-law died within months of being diagnosed with a brain tumor. Kassell now believes that focused ultrasound has potential to treat such tumors.“To be involved in this is a sort of moral imperative,” Kassell told STAT during an interview here at the foundation’s office, a short drive from the stately University of Virginia campus.Reminders of Dr. Neal Kassell’s long career as a practicing neurosurgeon and prolific researcher clutter his office. Matt Eich for STATAn old technology with new promiseYou might think of focused ultrasound as similar to the effect created when a magnifying glass focuses rays of sunlight to burn a hole in a leaf.During the procedure, patients slide into an MRI machine or lie on a bed where a machine concentrates sound waves on a precisely targeted spot of tissue. It’s most often used to burn and destroy tumors or other unwanted tissue, but early studies suggest it may have promise in unleashing the immune system or activating drugs in the body. And patients don’t have to be put to sleep, go under the knife, or be exposed to harmful radiation.First used in the clinic in the 1950s to treat pain, focused ultrasound is now predominantly used to treat prostate cancer in men and uterine fibroids in women.The treatment is more widely accessible in Europe and Asia than in the US, but only about 25,000 patients worldwide got focused ultrasound last year.Most patients need only a single session, but it’s costly: Treatment for prostate cancer costs about $25,000, and treatment for uterine fibroids goes for between $5,000 and $10,000. Many patients pay out of pocket, though some successfully appeal their insurers to get it covered.The technology is also being tested in early-stage clinical trials around the world to treat other cancers, hypertension, and even neurological conditions like brain tumors, obsessive compulsive disorder, and Parkinson’s disease. Patients are getting experimental treatments at 45 sites in the US. Dr. Neal Kassell Tags braincancermoonshotpolicy By Rebecca Robbins April 8, 2016 Reprintslast_img read more

Inside an Olympian’s testosterone ordeal

first_img Privacy Policy Privacy Policy Please enter a valid email address. Newsletters Sign up for Daily Recap A roundup of STAT’s top stories of the day. “She couldn’t understand. It was shock,” the coach said. “I said, ‘You’re not alone. There are others.’”Thus started a months-long process of trips to foreign clinics for batteries of tests and potentially life-changing choices.Another athlete has become the unwilling face of this complex and sensitive issue. Caster Semenya will race and likely win gold in the 800 meters. Believed to be hyperandrogenic, outed as physiologically different without her consent when she won the world title in 2009, the South African’s dominance has again pushed to the fore divisive questions about whether allowing women to compete with testosterone far above the female norm is fair and whether the hormone’s attributed performance-enhancing effects are significantly greater than other natural gifts, like height for basketball players.The AP will not name the athlete, her country, or give details that could identify her. In message exchanges, the athlete told AP she is focusing on competition in Rio de Janeiro and that her story is “personal and private.”However, the IAAF letter and AP’s interview with the coach, who was intimately involved in her eventual decision to agree to testosterone-curbing treatment, shed unprecedented light on the inner workings of the process that at least 14 women have gone through since the federation introduced it in 2011.Having not withstood a legal challenge brought by another female athlete, India’s Dutee Chand, the IAAF regulations are now on hold, suspended by the Court of Arbitration for Sport since July 2015. That means hyperandrogenic women can compete in Rio without reining in their natural testosterone levels.During the IAAF process, the athlete could not compete; the coach covered her absence from races by lying that she was injured. The AP will not identify the coach to avoid identifying the athlete.The first IAAF-requested tests to determine her exact condition required a trip to another nation’s capital, where she was met by Dolle, and was followed by two trips to a clinic in Nice, France, the coach said. RIO DE JANEIRO — The young athlete, now competing at the Rio Games, always considered herself to be a girl just like the others, a girl who loved to run. Then the governing body of track and field told her she was different, so different that her track career could be over.Marked “confidential” and signed “best sporting regards,” the letter outlined a choice for the athlete: Open herself up to a panel of medical experts who could recommend surgery or chemical treatment to reduce her testosterone levels, or stop competing.She had fallen foul of the International Association of Athletics Federations’ rules aimed at providing a fair playing field for women by keeping out athletes with high testosterone, a naturally occurring strength-building hormone.advertisement Newsletters Sign up for Morning Rounds Your daily dose of news in health and medicine. The IAAF’s medical director at the time told track authorities in the athlete’s country that blood and urine tests detected testosterone levels that were “abnormally high.” The suspected cause, wrote Dr. Gabriel Dolle, wasn’t doping but another hot-button issue likely to flare in the Rio Olympics’ final week: hyperandrogenism. Please enter a valid email address. About the Author Reprints Associated Press Yasuyoshi Chiba/AFP/Getty Images HealthInside an Olympian’s testosterone ordeal Leave this field empty if you’re human: The first Nice trip was accompanied but the second, lasting over a week, was not because the IAAF did not want to pay for someone to go with her, said the coach.“I didn’t want her to go alone. She didn’t speak French very well. I was afraid she wouldn’t understand,” the coach said. “I said, ‘Before you take any medicine, call me. Don’t take anything.’ The doctors say, ‘It’s for her good.’ And I thought to myself, ‘She’s fine as she is.’”After the second Nice trip, subsequent correspondence from Dolle offered two choices: surgery or medicinal treatment, said the coach. The coach urged the athlete not to go under the surgeon’s knife, saying: “We can’t take this risk; cut things off that God gave you … When things are cut off, it’s forever. You can’t get those parts back.”“She said, ‘Since I love this sport, I’ll take the medicine,’” the coach said.The treatment caused weight-gain and the unpleasant side-effect of making the athlete smell “awful,” sweaty and dirty, even though she stayed clean and wore deodorant and perfume, the coach said.When the IAAF eventually allowed the athlete to resume competing, she was delighted. But CAS only suspended the regulations, rather than overturn them entirely, giving the IAAF until July 2017 to produce evidence that high testosterone gives hyperandrogenic women a significant performance advantage.“She is free but she is scared that from one day to the next they could stop her from running again,” the coach said. “She’s in limbo, waiting for something bad to happen. She asks, ‘Are they going to stop me again? Are they going to make me take more medicine?”—  John Leicester Leave this field empty if you’re human: Had the athlete not been a runner, she might never have known of her condition. It was flagged up by IAAF tests that look for banned drugs. The athlete was stunned when told that her testosterone pointed to hyperandrogenism, her then-coach told the Associated Press.advertisement By Associated Press Aug. 15, 2016 Reprints Tags Olympicstestosteronelast_img read more

Public shaming of overdosed adults by police department’s Facebook post is ‘morally repugnant’

first_img Seth Mnookin It’s been 50 years since the American Medical Association classified alcohol abuse as a disease and more than 40 since they did the same with drugs. There’s been a lot of research since then devoted to effective methods for curtailing illegal drug use and treating drug abuse. Publicly shaming drug users or bullying those most in need of help isn’t one of them. I told my doctors my drug history. Yet they gave me opioids without counseling By Seth Mnookin Sept. 9, 2016 Reprints All of which makes me wonder who the police in East Liverpool, Ohio, were trying to reach by posting a salacious picture of two apparently overdosed adults in a car while a 4-year-old sat in the back. “We felt,” the department wrote on Facebook by way of explanation, “it necessary to show the other side of this horrible drug.” Related: ‘The story had to be told’: Ohio police official defends releasing photo of overdosed adults with boy Related: Leave this field empty if you’re human: First OpinionPublic shaming of overdosed adults by police department’s Facebook post is ‘morally repugnant’ About the Author Reprints Really? East Liverpool, which borders both Pennsylvania and West Virginia, is in a region decimated by heroin. It’s the precise part of the country Sam Quinones wrote about in “Dreamland,” his searing book on the opioid epidemic. Call me crazy, but I’m skeptical that anyone in the local population is thinking of starting to use opioids because of their fun and glamorous reputation.advertisement I’m going to let you in on a secret: Being physically dependent on heroin isn’t fun. When I needed a fix — and when I was using, I always needed a fix — I felt as if my skin was shot through with electricity. I used to scratch myself so violently that it looked as if my back had been raked by a tiger’s claw. When I scored some drugs, that didn’t mean I was going to go and party. Instead, it gave me a few hours reprieve from being bathed in anguish and anxiety.Here’s another secret: Being dependent on heroin is isolating and lonely. When I was using, my family was scared of me, my friends didn’t trust me, and even casual acquaintances weren’t keen on spending time with a sweaty, anxious mess of a person with a potentially deadly and definitely illegal obsession.Finally, on the off chance this isn’t blindingly obvious: Overcoming addiction is not easy.advertisement Please enter a valid email address. Privacy Policy Newsletters Sign up for Daily Recap A roundup of STAT’s top stories of the day. The actions of the East Liverpool Police Department were incredibly insensitive. They were also morally repugnant. In one of the pictures, the woman slumped over in the passenger seat, identified in the department’s Facebook post as the mother of the blond-haired boy sitting in a car seat directly behind her, is visibly turning blue. In both pictures, the boy is staring directly at the camera — which means that the officer who pulled the couple over decided it was more important to snap some money shots before he or she made sure the child didn’t witness his mother’s death. (Both adults were eventually administered first aid and survived.)I’m guessing that the same calculus went into the decision not to obscure the child’s extremely identifiable face. Sure, having a photo out there could follow him around for the rest of his life — but it sure as hell is a striking image.In our legal system, the police don’t get to decide guilt and innocence. The ability to convict someone on social media shouldn’t make that any less true.Seth Mnookin is the director of the MIT Graduate Program in Science Writing and the author of several books, including “The Panic Virus” and “Feeding the Monster.” Seth Mnookin is the director of MIT’s Graduate Program in Science Writing. His most recent book, “The Panic Virus,” is about the vaccine-autism controversy. Hulton Archive/Getty Images @sethmnookin Tags addictionfentanylopioidslast_img read more

Vouchers and incentives can increase kidney donations and save lives

first_img I wish such a program had been in place when I needed a kidney back in 2006. I discovered my kidneys were failing after a routine blood test came back with off-the-chart results. I actually felt fine at the time because, unbeknownst to me, my kidney function had been insidiously deteriorating over a long period of time. As a physician, I knew I had to find a donor — or spend years tethered to life-sapping dialysis.advertisement Related: Matching hearts — and kidneys and lungs. This website makes organ transplants in the US possible @slsatel The chronic organ shortage in this country is a well-known scourge, so any good idea for recruiting more organ donors is always welcome. Bravo, then, to the Ronald Reagan UCLA Medical Center and its voucher plan for kidney donors. It basically lets an individual donate a kidney to a stranger now and get a certificate for a future kidney transplant for a loved one.This idea was the brainchild of retired judge Howard Broadman, who feared he would be too old to donate a kidney when his grandson, Quinn, needed one in a few years. The concept has since been adopted at other medical centers and has been formalized under the umbrella of the private National Kidney Registry’s advanced donation program.The registry tries to leverage the impact of these donations by placing the donor within a chain of transplants. So-called never-ending altruistic donor chains are created using a complex algorithm involving detailed biological data. Donors like Judge Broadman can kick off such a chain by donating to a stranger waiting for a transplant. That stranger, who already has a willing but incompatible donor in the wings, asks that donor to give to another person waiting for a transplant, and so on. Each living donor in this system gives to a stranger, and the chain of donors is kept going as long as possible.advertisement By Sally Satel Sept. 13, 2016 Reprints Here’s an even bolder idea for increasing the supply of kidneys: give prospective donors an incentive to serve as the kick-off donor in a chain. This approach would create never-ending compensated donor chains. Benefits to such donors could be tax credits, contributions to retirement plans, a contribution to a charity designated by the donor, and other options. To avoid situations with outsize appeal to poor individuals who might impulsively rush to donate and later regret it, no one would receive an outright lump sum of cash.A bill currently in Congress — the Organ Donor Clarification Act introduced in May by Representative Matt Cartwright (D-Pa.) — would let researchers study the potential effects of various incentives. The bill aims to clarify that pilot studies would not violate Section 301 of the 1984 National Organ Transplant Act, which bans the commercialization and private sale of organs.Incentives have enormous potential. The White House recently offered social media and cutting-edge medical technology as ideas for reducing the wait list. Technology could some day make organ donation obsolete, but until we can make kidneys or kidney stand-ins in a lab, such as with 3-D printed kidneys, implantable microdialysis machines, genetically modified transplantable pig kidneys, and the like, we must rely on organs from humans. Kidneys from deceased donors certainly help. But those from living donors are in far greater supply and generally function longer in recipients.It’s imperative that we take advantage of every new idea. Vouchers don’t require an act of Congress and are an obvious next step for increasing the supply of much-needed kidneys.Sally Satel, MD, is a resident scholar at the American Enterprise Institute. She is editor of “When Altruism Isn’t Enough: The Case for Compensating Kidney Donors” (AEI Press, 2009). First OpinionVouchers and incentives can increase kidney donations and save lives Brendan Smialowski/AFP/Getty Images Related: In groundbreaking trials, surgeons to use infected kidneys for transplants Another way to generate more kidney donors, I believe, would be to offer a different kind of voucher. It would be for prospective donors who ultimately decline to give a kidney to a friend or even a distant relative because they want to be able to assist a closer member of their family or inner circle should the need arise. I call this the peace-of-mind voucher. It is already legal under the federal Organ Procurement and Transplantation Network for a living donor to get priority for a kidney under the rare but not unheard of chance that he or she develops kidney failure down the line. Why not expand this option to all living donors? About the Author Reprints But finding a living donor was a hellish experience. A number of people told me they wanted to help but were reluctant to do so because they worried their child might need a kidney in the future. Although this concern is understandable, it is surely overblown. Unless an individual has diabetes, chronic hypertension, collagen vascular disease (such as lupus), or polycystic kidney disease, the odds of an otherwise healthy person developing renal failure over a lifetime are slim. Even so, it’s easy to understand a parent’s reluctance. After 18 months — thankfully, I was able to stave off dialysis until the very last minute — I was rescued by a fond acquaintance turned dear, dear friend who heard through the grapevine that I needed a kidney.If the federal organ transplant network, which operates under the Department of Health and Human Services, were to provide peace-of-mind vouchers for living donors, specified family or friends of those donors could redeem them at any transplant center. (Selling the voucher would, of course, be against the law). Unlike the UCLA program, where the certificate is earmarked by the donor for a specific person at high risk for a transplant in the future, peace-of-mind vouchers aren’t likely to ever be redeemed because healthy people don’t usually develop kidney failure.No voucher program will erase the organ backlog — there are now more than 100,000 people waiting for kidneys. Last year, less than one-fifth of those on the waiting list received a transplant — the average wait is almost four years, with some people waiting much longer. Every day, 12 people on the national waiting list die; they simply couldn’t survive the wait. But “paying an organ forward” in the service of a loved one known to need a kidney in the future is an excellent option for interested prospective donors and will surely save a number of lives. It is hard to know how many prospective donors would take advantage of peace-of-mind vouchers, but it seems worth implementing them on a pilot basis. Sally Satel [email protected] Tags incentiveskidney diseaseorgan donationlast_img read more

Here’s how the next director-general can rebuild the World Health Organization

first_img What is it? About the Author Reprints Nearly nine months have passed since the last Ebola patient was declared free of the disease in West Africa. Yet one body — the World Health Organization — is still ailing, stung by criticism that it responded slowly to that local and global emergency.Despite encouraging signs that it learned valuable lessons from the Ebola outbreak, faith in the WHO hasn’t yet fully returned. The organization has been chronically underfunded for years, and its outdated structure has resisted reform over many decades. This has led to a vicious spiral of underachievement. Log In | Learn More By Ed Whiting Jan. 23, 2017 Reprints What’s included? GET STARTED Politics STAT+ is STAT’s premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond.center_img FABRICE COFFRINI/AFP/Getty Images Daily reporting and analysis The most comprehensive industry coverage from a powerhouse team of reporters Subscriber-only newsletters Daily newsletters to brief you on the most important industry news of the day STAT+ Conversations Weekly opportunities to engage with our reporters and leading industry experts in live video conversations Exclusive industry events Premium access to subscriber-only networking events around the country The best reporters in the industry The most trusted and well-connected newsroom in the health care industry And much more Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr. Tags policypublic health Here’s how the next director-general can rebuild the World Health Organization Ed Whiting @EdWhiting1 Unlock this article by subscribing to STAT+ and enjoy your first 30 days free! GET STARTEDlast_img read more

Watch: How you fight opioid addiction — with opioids

first_imgHealthWATCH: How you fight opioid addiction — with opioids [email protected] Alex Hogan @hoganalex Watch: ‘Like you’re living in hell’: A survivor on what opioid withdrawal did to his body Tags drug abuseopioids By Alex Hogan March 23, 2017 Reprints In the video above, Lukas explains the history and science of these opioid treatment medications.The stakes could not be higher for those addicted to opioids. More than 30,000 Americans died in 2015 from illicit drugs like heroin or prescription drugs such as OxyContin and fentanyl. The epidemic has surpassed the height of the HIV/AIDS crisis in terms of yearly death toll.center_img For those struggling with opioid addiction, breaking the habit can be demanding. Scott Lukas is researching and developing drugs to treat the condition. Alex Hogan/STAT About the Author Reprints Senior Multimedia Producer Alex coordinates video production and STAT Brand Studio projects. For the millions of Americans struggling with opioid addiction, breaking the habit can be physically and psychologically demanding.Those who quit abruptly can experience violent withdrawal symptoms for up to 10 days, and once those subside, they still have to cope with anxiety and intense cravings. Relapse is common.Scott Lukas, director of the Behavioral Psychopharmacology Research Laboratory at McLean Hospital in Belmont, Mass., has spent much of his career researching and developing drugs to treat opioid addiction. Many of the drugs on the market are opioids themselves, but are formulated to deter abuse, while minimizing withdrawal symptoms.advertisement Using opioids to beat back an addiction to themVolume 0%Press shift question mark to access a list of keyboard shortcutsKeyboard ShortcutsEnabledDisabledPlay/PauseSPACEIncrease Volume↑Decrease Volume↓Seek Forward→Seek Backward←Captions On/OffcFullscreen/Exit FullscreenfMute/UnmutemSeek %0-9 facebook twitter Email Link EmbedCopiedLive00:0003:1303:13  Related:last_img read more

Why some adults, even into their 40s, still see the pediatrician

first_imgAdult patients keep their pediatricians for a variety of reasons. Those with developmental or intellectual disabilities might remain with their pediatricians into adulthood, because changing doctors could be especially traumatic. Other adults may simply have not gotten around to shopping for an internist. But people with lifelong conditions — like congenital heart defects, sickle cell disease, or cystic fibrosis — can have an especially difficult time graduating to adult care. By Leah Samuel May 1, 2017 Reprints Related: He said that his pediatrician regularly consults with internists to coordinate his care, especially now that he is middle-aged.“Well, I’m starting to have some of the old symptoms, and we have to figure out if it’s the condition or if it’s just that I’m old and out of shape,” he said. “Before, when you had my condition, you didn’t live long enough for that to come up. I think that’s why the doctors at Children’s don’t mind that I still come there.”‘Jumping off the diving board into the deep end’While doctors have to be certified to treat children, there are no rules for when a patient must switch to another doctor once the patient reaches adulthood. The American Academy of Pediatrics recommended, in 1938, that patients be no older than 18 years of age. In 1969, it raised the recommended age for ending pediatric care to 21.But since then, the prognosis has greatly improved for conditions that once led to childhood deaths. Patients are surviving longer, to the point of outgrowing the need for a pediatrician, said Boston Children’s Hospital spokesperson Irene Sege.For example, 20 years ago sickle-cell disease patients were dying by age 30, “But now, they are living into their 50s or 60s, so it makes sense for them to have adult care,” Sege said.Some doctors and hospitals have responded with programs to make it easier for adult patients to leave their pediatricians. For instance, Seattle Children’s Hospital has a formal transition program, where patients as young as 12 get to know the doctors for grown-ups.“We try to make it as nonthreatening at possible,” said Dr. Jason Deen, a pediatric cardiologist at the hospital. “We tell the child, ‘Sometime in the future, you will see a doctor like me.’” Then the hospital follows the young patients, introducing age-appropriate health issues over time. “Like, at 16, we’ll start talking about sexual health and pregnancy concerns,” Deen said. But it can be a confusing and arduous process, especially for young adults with complicated health conditions, said Diane Pickles, whose son Jake, age 22, recently left his pediatrician. Born with hypoplastic left heart syndrome, Jake had been a patient at Boston Children’s Hospital since he was an infant.“The transition to adult care is like jumping off the diving board into the deep end,” said Pickles.By the time a patient with a chronic condition reaches adulthood, there is a well-established relationship not only between the child’s family and the pediatrician, but also between that pediatrician and the various specialists helping to manage the condition. Recreating that can be a challenge, said Pickles.“It’s hard to find a primary care doctor who will give you the time and the focus you had with the pediatrician for all those years,” she said. “Even when my son was 17, his cardiologist said to hold on to the pediatrician until they kick us out.”Delaying the switchThe late teens and early 20s can also be an inopportune time to change doctors, said Dr. Susan Arnold, a pediatric neurologist at University of Texas Southwestern Medical Center. “A child goes off to college, where it’s hard to get set with a health care provider in a place where they won’t be living permanently anyway,” she said. “So they follow up with their pediatrician.“I had a young man with epilepsy who went off to college,” she added. “I told him to see me on breaks and I would refill his medicine and do his checkups.”Insurance can also keep grown-up patients with pediatricians. In some states, the Children’s Health Insurance Program (CHIP) covers pediatric care up to age 19 or 20, leading some to postpone transitioning until that age. Other patients start off as children on family insurance plans covering pediatric doctors and specialists. Since children can remain on their parents’ insurance until age 26, these young people sometimes keep their doctors along with their coverage. Pediatricians take on new role: Fighting the bigotry and violence that hurts kids Haejin Park for STAT Related: A pediatrician’s plea to lawmakers: Don’t cut Medicaid Still, a pediatrician with grown-up patients can run into unusual situations, said Arnold, whose oldest patient is 27. She recalled a visit with a longtime patient, his father, and his fiancee.“She wanted to know about his epilepsy,” Arnold recalled. “But then, we got to counseling them on things about the wedding night. And his dad was in the room! And I’m like, ‘Maybe it’s about time to find an adult specialist, preferably a gentleman, who can answer those questions.’”Vetor jokes about being a “veteran” pediatric patient.“I’ve retired a few doctors and nurses,” he said. “And now some of them are younger than me.” For Vetor, part of it is the approach. “I really like going there. Pediatricians are more friendly and personable. And if you have a question, they have time to answer.”advertisement HealthWhy some adults, even into their 40s, still see the pediatrician When Jeff Vetor goes for his annual pediatrician visits, the part that usually throws the nurse is when they go to take his vitals. “The hardest part is when they have to find the right size blood pressure cuff,” Vetor said.At age 46, “I’m the biggest kid there,” laughs Vetor. He is a patient at Children’s Hospital of Michigan, where he has been treated for a congenital heart defect, called pulmonary stenosis, for most of his life.For a few years in his thirties, Vetor switched to an adult doctor. But when Vetor’s son was born with the same condition, he took the baby to the hospital of his childhood, and soon decided to return as a patient himself. “For a while he and I had the same pediatrician,” Vetor said with a laugh.advertisement Tags patientspediatricsphysicianslast_img read more

Pharmalot, Pharmalittle: J&J and Bayer win their first trial over alleged Xarelto harms

first_img Pharmalot, Pharmalittle: J&J and Bayer win their first trial over alleged Xarelto harms Log In | Learn More Daily reporting and analysis The most comprehensive industry coverage from a powerhouse team of reporters Subscriber-only newsletters Daily newsletters to brief you on the most important industry news of the day STAT+ Conversations Weekly opportunities to engage with our reporters and leading industry experts in live video conversations Exclusive industry events Premium access to subscriber-only networking events around the country The best reporters in the industry The most trusted and well-connected newsroom in the health care industry And much more Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr. Top of the morning to you, and what a fine one it is. Once again, a bright, shiny sun and cool breeze are enveloping the Pharmalot campus. What better way to start the day, yes? This is especially true now that a calm has descended since the short person left for the local schoolhouse and the official mascots are on their sixth nap of the day. No naps for us, though. There is much to be done. On that note, here are some items of  interest. Have a smashing day and do keep in touch …A federal court jury found that Johnson & Johnson and Bayer did not mislead a Louisiana man and his doctors about the health risks of the Xarelto blood thinner, Bloomberg News reports. The companies, therefore, were determined not liable for his injuries and later medical problems. This was the first of more than 18,000 patient lawsuits filed against J&J and Bayer, which jointly developed Xarelto, to come to trial. Unlock this article by subscribing to STAT+ and enjoy your first 30 days free! GET STARTED By Ed Silverman May 4, 2017 Reprints Alex Hogan/STAT What is it? STAT+ is STAT’s premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond. What’s included?center_img GET STARTED Pharmalot About the Author Reprints Ed Silverman Pharmalot Columnist, Senior Writer Ed covers the pharmaceutical industry. [email protected] @Pharmalot Tags legalpharmaceuticalsSTAT+last_img read more

My sister’s cancer might have been diagnosed sooner — if doctors could have seen beyond her weight

first_img Tags cancerpatientsphysicians Privacy Policy In treating obese patients, too often doctors can’t see past weight My older sister, Jan, visited me in San Francisco last spring. “You look great,” I told her, noticing that her clothes were hanging loose; she’d been heavy most of her life. “I’ve lost 60 pounds,” she said, and I automatically congratulated her.“I wasn’t trying,” she replied.It hit me then that something was very wrong, first with her health, but also with the way I assumed that her weight loss was a sign of well-being. My own judgments and shame associated with being fat got in the way of seeing my sister. Looking closer, her face seemed strained, and despite the constant smile she turned on, she wasn’t well. She told me that she’d been in so much pain that she’d had little appetite for months.advertisement “He didn’t do anything for me, and he didn’t find anything. He just saw me as a fat, complaining older woman,” Jan said. Demeaned and discouraged, she didn’t seek a second opinion right away. Instead, she explored possible causes of her abdominal pain, wasting months avoiding dairy and gluten and taking over-the-counter pain medications. I asked Jan if she’d seen a doctor. She had, but it hadn’t gone well. The doctor she’d known for years had converted his practice into a concierge service, and she hadn’t wanted to pay the extra $15,000 to stay with him. So she’d made an appointment with an OB-GYN a friend had recommended. Jan’s eyes welled up as she described the visit.She had run down her symptoms: vaginal bleeding, unexplained weight loss, and near-constant pelvic pain. She told me the doctor hadn’t taken her complaints seriously, dismissing her concerns and performing a routine examination.advertisement Newsletters Sign up for Cancer Briefing A weekly look at the latest in cancer research, treatment, and patient care. Please enter a valid email address. [email protected] Jan at home in Conifer, Colo., just a few months before she died, with her dog Sunny. Cynthia Fraser Taylorcenter_img Related: Leave this field empty if you’re human: Jan’s experience as a fat 59-year-old woman is hardly unique. Several studies have shown that many physicians consider the time spent with obese patients a waste, and they don’t hesitate to broadcast their biases in the examining room. Fat people are less likely to seek medical treatment because they know the stigma and lectures that await them. My oldest sister, Cynthia, who is also heavy, recently visited a doctor for a rheumatologic problem and was curtly told to “lay off the hamburgers and Cokes,” even though she never touches fast food. On her next visit, she brought along her slim and athletic husband, and says she got better care by association.Weight has long been part of our family drama. My sisters and I weren’t as trim and fit as our parents, who focused on thinness as the barometer of our worth. Our father is a pediatrician, and perhaps the sense of failure that many doctors feel when they see their fat patients in the office greeted him every evening when he came home to his kids. Our parents believed that making comments about our weight and putting us on diets would help — just the opposite of what the American Academy of Pediatrics today considers better wisdom for preventing obesity and eating disorders. Criticizing us for being fat, instead of encouraging us to be athletic, became a self-fulfilling prophecy. Jan, who’d been strong, bright, and athletically gifted as a child, the fastest skier and the best at team sports, became the heaviest of us four sisters.During our visit in San Francisco, I encouraged Jan to see another doctor to get to the bottom of what was ailing her. A few months later, she finally got an appointment at an internist’s office. A physician assistant examined her. Jan arrived at the visit weak and wracked with pain. She came out of it in tears, with no answers and no relief.“She wouldn’t give me anything because she thought I was just trying to get an opioid fix,” she told Cynthia, who had accompanied her. Did the physician assistant think Jan was putting on an act to cadge drugs because she was fat, that despite her detailed and articulate medical complaints — not to mention her obvious and tremendous pain — she fit some undisciplined, drug-seeking profile?The physician assistant did, at least, send Jan to have some blood tests. When she had finished giving blood, she was so exhausted she couldn’t drive herself home. Very early the next morning, Jan got a call from the internist who, even though he had never met her, told her to go immediately to the emergency room. She was quickly admitted to the intensive care unit in critical condition, with a sky-high level of calcium in her blood. An MRI revealed an enormous mass in her abdomen.When Jan was stable enough for surgery, the hospital’s gynecologic oncologist removed the largest endometrial tumor he said he’d ever seen, the size of a volleyball. It had peppered her pelvis with cancer, infiltrating her bladder and other organs. The MRI also showed spots on Jan’s lungs, likely signs that the disease was spreading even further.In hindsight, endometrial cancer is an easy disease to Google. The first few hits reveal the signs and symptoms: unexplained weight loss, vaginal bleeding after menopause, pelvic pain. Jan had them all. I’m no doctor, and I know that physicians are not infallible, but it strikes me that those symptoms — the ones the patient came in worried about — should’ve raised red flags far more than the fact that she was overweight.Jan went through a few rounds of chemotherapy and lost even more weight. She took some perverse pleasure at being able to fit into normal sizes and fashionable clothes for the first time in her life, not the unsophisticated, uninspired garments that most manufacturers muster up for plus-sized women. By then she’d lost about 100 pounds and, despite her conspicuous illness — the wig, the pallor, the fear in her eyes — people kept on complimenting her about her weight loss. They, too, saw only her size.Jan died last Christmas Eve, six months after learning she had cancer.Hers was an unusually aggressive type of endometrial cancer. Maybe she would have died just as quickly if she’d been thin. But I can’t help thinking that Jan might have had a better chance if her doctors had looked beyond her weight and their prejudices about fat middle-aged women; if she hadn’t been so reluctant to seek medical treatment because of the fat-shaming lectures she knew awaited her; and if she’d grown up thinking that her body was OK the way it was, and she should love it, move it, and take care of it.Laura Fraser is a journalist and author of several books, including “Losing It: America’s Obsession with Weight and the Industry that Feeds on It” (Dutton). About the Author Reprints @LauraFraserSF First OpinionMy sister’s cancer might have been diagnosed sooner — if doctors could have seen beyond her weight By Laura Fraser Aug. 15, 2017 Reprints Laura Fraserlast_img read more

Spark’s novel gene therapy for blindness is racing to a historic date with the FDA

first_img Senior Writer, Biotech Adam is STAT’s national biotech columnist, reporting on the intersection of biotech and Wall Street. He’s also a co-host of “The Readout LOUD” podcast. Vanessa Bumbeers/Unsplash Daily reporting and analysis The most comprehensive industry coverage from a powerhouse team of reporters Subscriber-only newsletters Daily newsletters to brief you on the most important industry news of the day STAT+ Conversations Weekly opportunities to engage with our reporters and leading industry experts in live video conversations Exclusive industry events Premium access to subscriber-only networking events around the country The best reporters in the industry The most trusted and well-connected newsroom in the health care industry And much more Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr. Tags drug developmentdrug pricinggene therapygeneticspolicyrare diseaseSTAT+ Log In | Learn More By Adam Feuerstein Oct. 9, 2017 Reprints The $1 million medicine is coming.On Thursday, a committee of experts invited by the FDA will meet outside Washington D.C. to review an experimental gene therapy from Spark Therapeutics (ONCE). Barring unexpected surprises, the experts will advise the FDA to approve the one-time shot, which will be used to treat a rare, inherited form of childhood blindness. What is it? [email protected] STAT+ is STAT’s premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond.center_img Adam Feuerstein GET STARTED What’s included? Unlock this article — plus daily coverage and analysis of the biotech sector — by subscribing to STAT+. First 30 days free. GET STARTED Biotech @adamfeuerstein About the Author Reprints Spark’s novel gene therapy for blindness is racing to a historic date with the FDA last_img read more