Transforming HIV prevention in Europe

This article is part of POLITICO Telescope: The New AIDS Epidemic, an ongoing exploration of the disease today.

The world’s battle to end the HIV epidemic is being fought on two fronts. The first involves getting as many people as possible who are living with the virus diagnosed and rapidly onto antiretroviral medication. This reduces the virus inside their bodies to such a low level that it is undetectable and therefore cannot be passed to others. The approach is known as “undetectable = untransmittable” or “U=U*.”

The second front is focused on protecting people from contracting the virus in the first place, even if they have been exposed to it — an approach known as pre-exposure prophylaxis, or PrEP. Taken as prescribed, PrEP makes a person’s body almost entirely resistant to HIV infection.

There is a critical need to bring forward new PrEP options that are informed by and designed for the communities that could benefit from PrEP in Europe.

Jared Baeten MD, PhD, vice president for HIV clinical development at Gilead Sciences

PrEP comprises antiretroviral drugs that can be taken intermittently, around the time someone expects to be sexually active. They protect against the virus in two ways: by increasing the production of antibodies in the cells in the rectal or vaginal lining, making them less receptive to HIV in the first place, and by interfering with the ability of HIV to replicate in the body.

Nearly 5 million people around the world have taken PrEP at least once — including about 2.8 million in Europe — and it has been shown to reduce the incidence of HIV infection during sex by 99 percent. In the European Union, new HIV infections have fallen by about 45 percent since PrEP was licensed in 2016, although this decline is also partly due to U=U.

PrEP as part of combination prevention strategies

Missing doses or running out of PrEP can mean becoming susceptible to HIV again. I via Shutterstock

Today, PrEP comes primarily in the form of an oral tablet, which has the advantage of being cheap to produce and easy to store. But it is not a universal solution. Because it needs to be taken regularly while someone is sexually active, missing doses or running out can mean becoming susceptible to HIV again. What’s more, in the same way that some bacteria are developing resistance to antibiotics, the HIV that does enter the bodies of people who have paused or discontinued their use of PrEP has a greater chance of being resistant to subsequent antiretroviral medications they may then need.

PrEP taken in tablet form is also an issue for people who need to keep their use of PrEP private, perhaps from family members or partners. Having to take a pill once a day or two or three times a week is something that may be hard to hide from others. And some people, such as migrants, who may not be fully integrated with a country’s health care system, may find it hard to access regular supplies of daily medication. Limitations such as these have prompted the development of alternative, innovative ways for people to protect themselves that are more tailored to their needs and life situations. These include longer-acting drugs that can be injected.

Like existing oral medications, injectable PrEP works by preventing HIV from replicating in a person’s body, but its effect lasts much longer. In September, the EU approved the use of the first intramuscular injectable that can be given every two months. Gilead is, until 2027, running trials of another injectable option, which, once the required efficacy and safety have been demonstrated, could be administered subcutaneously just once every six months. This would be more convenient for many people and more adapted to the circumstances of certain populations, such as migrants, and may therefore lead to better adherence and health outcomes.

HIV continues to be a public health threat across Europe, where in 2022 more than 100,000 people were newly diagnosed with HIV.

Jared Baeten MD, PhD, vice president for HIV Clinical Development at Gilead Sciences

Further ahead — but still in the early stages of development and testing — are patches and implants, which would provide a continuous supply of antiretroviral drugs, and immunotherapies. Immunotherapies would comprise a broad spectrum of naturally produced or manufactured antibodies against HIV, which, in theory, would pre-arm their bodies to resist infection.

As more types of PrEP become available, we will see a greater awareness of its benefits, as more people are able to find the version of PrEP that best suits their living conditions and personal requirements. This is a fundamental principle of “combination prevention,” or innovative interventions that reflect the specific needs of the people they are trying to reach.

Preparing for the future

Despite clear scientific evidence of the benefits of PrEP, there are still some hurdles we need to overcome to make it a powerful tool to end HIV altogether. These include investments and funding in prevention and availability, and programs to combat stigma.

Although the EU licensed PrEP in 2016, availability varies across the bloc. In France, the U.K., Spain, Germany and, more recently, Italy, oral PrEP is available at no cost to those who would benefit from it. In Romania, although PrEP is included in the country’s new HIV National Strategy, it is not yet funded, and it is only available via non-governmental organizations that rely on external funding sources. And in Poland, Hungary and Bulgaria, PrEP is not state funded and there are no current plans to make it so. In many member states, even though PrEP is technically licensed, in practice it can be hard to get hold of, in particular for specific communities, such as women, migrants or trans people. Potential users may find it hard, for example, to access testing or even doctors who are willing to prescribe it.

Jared Baeten MD, PhD, vice president for HIV clinical development at Gilead Sciences

Another key challenge that health systems and providers face is communicating the importance of PrEP to those who would most benefit, and thereby increase uptake. Many respondents in multiple studies have indicated that they don’t feel HIV is something that affects them, or they have indicated that there is a general stigma in their communities associated with sexual health matters. And some groups that are already discriminated against, such as sex workers, people who inject drugs, and migrants, may be hesitant to engage with health care systems for fear of reprisals. Again, injectable PrEP could help reach such key populations as it will offer a more discreet way of accessing the preventive treatment.

“There is a critical need to bring forward new PrEP options that are informed by and designed for the communities that could benefit from PrEP in Europe,” says Jared Baeten MD, PhD, vice president for HIV clinical development at Gilead Sciences. “At Gilead, we are excited to engage with communities and broader stakeholders to inform our trials efforts and partner with them in our goal to develop person-centered innovations that can help end the HIV epidemic in Europe.”

Europe is leading the world’s efforts toward ending HIV, but, even in the bloc, PrEP usage and availability varies from country to country and demographic to demographic. If the region is to become the first to end the HIV epidemic entirely, the European Commission, the European Parliament and the governments of member states will need to lead the way in fighting stigma, promoting and prioritizing HIV prevention in all its aspects including innovation in therapeutics strengthening the financing and funding of healthcare systems, and establishing effective pathways to zero transmission to end HIV entirely.

“HIV continues to be a public health threat across Europe, where in 2022 more than 100,000 people were newly diagnosed with HIV,” says Baeten. “HIV prevention is critical and has the potential to change the trajectory of the epidemic, but stigma and other barriers limit the impact that PrEP medications can have on reducing HIV infections in Europe. We all have a responsibility to collaboratively partner to make this work.”

*U=U is true on two premises: taking HIV medicines as prescribed and getting to and staying undetectable for at least six months prevents transmitting HIV to partners through sex. Undetectable means that the virus cannot be measured by a viral load test (viral load <200 copies/mL)



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US Supreme Court maintains abortion pill access for now as legal fight continues

Access to a widely used abortion pill will remain at current levels for the time being, the U.S. Supreme Court ruled Friday in a decision staving off sweeping restrictions ordered by lower courts.

The high court’s decision keeps the drug, mifepristone, available for now, but the legal battle over the drug, which has become the most common method of abortion nationwide, could drag on for months if not years to come.

Justices Samuel Alito and Clarence Thomas dissented from the Supreme Court’s action, which prevents earlier rulings from a Texas-based judge and a federal appeals court from taking effect.

Those rulings would have suspended several policies the FDA enacted since 2016 to make mifepristone more accessible — including telemedicine prescription, mail delivery, retail pharmacy dispensing and the approval of a generic version of the drug. The lower-court action also would have scaled back the federally approved use of the drug from 10 weeks of pregnancy to seven weeks — before many patients know they are pregnant.

The Supreme Court’s unsigned order on Friday keeps those rulings blocked while litigation continues — first at the 5th Circuit Court of Appeals and then, perhaps, back at the Supreme Court. As a result, the status quo for access to mifepristone will likely remain in place through the fall and perhaps well into next year.

The case could return to the justices for full briefing, oral arguments and a final decision in the summer of 2024, just as the presidential campaign gets into full swing.

President Joe Biden cheered the brief Friday ruling for “preventing a lower court decision from going into effect that would have undermined FDA’s medical judgment and put women’s health at risk.”

“As a result of the Supreme Court’s stay, mifepristone remains available and approved for safe and effective use while we continue this fight in the courts,” he said.

As is often the case when acting on requests for emergency relief, the court’s majority did not explain its reasons for granting the stay.

Thomas also offered no explanation for opposing the stay, but Alito wrote a four-page opinion detailing his reasons for rejecting it, often echoing arguments made by the anti-abortion challengers in the case.

Alito wrote the majority opinion last June in Dobbs v. Jackson Women’s Health Organization, which ended the federal constitutional right to abortion. But no other justice signed onto his dissent on Friday.

He argued that his colleagues should have allowed an April 12 preliminary ruling from the 5th Circuit to be implemented because the Biden administration and Danco Laboratories, the drug company that makes the brand-name version of mifepristone, didn’t show that they would “suffer irreparable harm” under that ruling.

The restrictions on the drug ordered by the appeals court, Alito wrote, “would not remove mifepristone from the market” but “would simply restore the circumstances that existed (and that the Government defended) from 2000 to 2016 under three Presidential administrations.”

Alito also speculated that, if the high court had allowed the 5th Circuit’s ruling to take effect, the Biden administration might have used “enforcement discretion” to avoid implementing the restrictions.

Danco and another drug company — GenBioPro, which makes the generic version of the drug — had told the Supreme Court that the restrictions ordered by the 5th Circuit could amount to a nationwide ban of the drug, at least temporarily. GenBioPro would lose its federal approval for the generic version, and Danco would have to revise its product labels, recertify providers, apply to the FDA for a new regulatory framework and jump through other time-consuming administrative hoops, potentially cutting off access to the pill for months.

Attorneys for anti-abortion groups dismissed these claims, urging the high court to “restore a modicum of safety for the women and girls who use the drug” by reimposing the FDA’s pre-2016 restrictions.

The fight over mifepristone now returns to the conservative-leaning 5th Circuit, which will review briefs from both sides beginning next week and is set to hear oral arguments on May 17.

Mifepristone has been used for decades as part of a two-drug medication regimen to induce an abortion early in pregnancy. These medication abortions have become increasingly popular, particularly as patients have availed themselves of the newer options for access, including drugs prescribed via telemedicine and sent through the mail. In the wake of the Dobbs decision, which allowed states to ban abortion within their borders, the pills have also become a key way patients have circumvented those laws.

Last year, anti-abortion medical groups sued to revoke the FDA’s original 2000 approval of mifepristone as well as the agency’s policies expanding access to the drug over the past seven years. A federal district judge appointed by former president Donald Trump, Matthew Kacsmaryk, issued a preliminary ruling earlier this month largely siding with the challengers. The 5th Circuit Court of Appeals narrowed Kacmsaryk’s ruling, keeping the drug on the market but suspending the policies that broadened access.

Numerous studies have found mifepristone to be safe and effective — whether dispensed in-person by a doctor or sent by mail. The country’s leading medical groups, including the American Medical Association, have petitioned courts to uphold FDA approval of the pill, vouching for the agency’s rigor and warning that siding with the challengers would open the door to a wave of cases going after everything from vaccines to birth control. The pharmaceutical industry has also cautioned that companies will hesitate to seek approval for new cures if they fear FDA approval could someday be second-guessed and overturned by courts.

While the Supreme Court’s decision maintains access to mifepristone at the federal level for now, Democratic state officials and medical groups are bracing for the possibility that judges could implement restrictions in the months ahead. Legislatures in some red states are also moving to enact state restrictions on the drug, on top of existing laws restricting abortions more generally.

Several blue states have recently moved to stockpile doses of either mifepristone or misoprostol — the second pill commonly used with mifepristone for medication abortions. Misoprostol can also terminate a pregnancy on its own, but it carries a slightly higher rate of complication and more side effects than the two drugs together.

Clinics as well as online vendors are preparing their doctors and nurses to pivot to offering misoprostol-only abortions if necessary. The drug, which is also used to treat stomach ulcers, is subject to fewer FDA restrictions than mifepristone.

The Supreme Court’s order came one week after the case reached the justices on an emergency basis. Alito, who handles emergency requests emerging from the 5th Circuit, acted twice to place temporary holds on the 5th Circuit’s ruling so that the justices could have more time to consider the matter.



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Virtual or In Person: Which Kind of Doctor’s Visit Is Better, And When It Matters

By Michelle Andrews

Monday, March 06, 2023 (Kaiser News) — When the covid-19 pandemic swept the country in early 2020 and emptied doctors’ offices nationwide, telemedicine was suddenly thrust into the spotlight. Patients and their physicians turned to virtual visits by video or phone rather than risk meeting face-to-face.

During the early months of the pandemic, telehealth visits for care exploded.

“It was a dramatic shift in one or two weeks that we would expect to happen in a decade,” said Dr. Ateev Mehrotra, a professor at Harvard Medical School whose research focuses on telemedicine and other health care delivery innovations. “It’s great that we served patients, but we did not accumulate the norms and [research] papers that we would normally accumulate so that we can know what works and what doesn’t work.”

Now, three years after the start of the pandemic, we’re still figuring that out. Although telehealth use has moderated, it has found a role in many physician practices, and it is popular with patients.

More than any other field, behavioral health has embraced telehealth. Mental health conditions accounted for just under two-thirds of telehealth claims in November 2022, according to FairHealth, a nonprofit that manages a large database of private and Medicare insurance claims.

Telehealth appeals to a variety of patients because it allows them to simply log on to their computer and avoid the time and expense of driving, parking, and arranging child care that an in-person visit often requires.

But how do you gauge when to opt for a telehealth visit versus seeing your doctor in person? There are no hard-and-fast rules, but here’s some guidance about when it may make more sense to choose one or the other.

If It’s Your First Visit

“As a patient, you’re trying to evaluate the physician, to see if you can talk to them and trust them,” said Dr. Russell Kohl, a family physician and board member of the American Academy of Family Physicians. “It’s hard to do that on a telemedicine visit.”

Maybe your insurance has changed and you need a new primary care doctor or OB-GYN. Or perhaps you have a chronic condition and your doctor has suggested adding a specialist to the team. A face-to-face visit can help you feel comfortable and confident with their participation.

Sometimes an in-person first visit can help doctors evaluate their patients in nontangible ways, too. After a cancer diagnosis, for example, an oncologist might want to examine the site of a biopsy. But just as important, he might want to assess a patient’s emotional state.

“A diagnosis of cancer is an emotional event; it’s a life-changing moment, and a doctor wants to respond to that,” said Dr. Arif Kamal, an oncologist and the chief patient officer at the American Cancer Society. “There are things you can miss unless you’re sitting a foot or two away from the person.”

Once it’s clearer how the patient is coping and responding to treatment, that’s a good time to discuss incorporating telemedicine visits.

If a Physical Exam Seems Necessary

This may seem like a no-brainer, but there are nuances. Increasingly, monitoring equipment that people can keep at home — a blood pressure cuff, a digital glucometer or stethoscope, a pulse oximeter to measure blood oxygen, or a Doppler monitor that checks a fetus’s heartbeat — may give doctors the information they need, reducing the number of in-person visits required.

Someone’s overall physical health may help tip the scales on whether an in-person exam is needed. A 25-year-old in generally good health is usually a better candidate for telehealth than a 75-year-old with multiple chronic conditions.

But some health complaints typically require an in-person examination, doctors said, such as abdominal pain, severe musculoskeletal pain, or problems related to the eyes and ears.

Abdominal pain could signal trouble with the gallbladder, liver, or appendix, among many other things.

“We wouldn’t know how to evaluate it without an exam,” said Dr. Ryan Mire, an internist who is president of the American College of Physicians.

Unless a doctor does a physical exam, too often children with ear infections receive prescriptions for antibiotics, said Mehrotra, pointing to a study he co-authored comparing prescribing differences between telemedicine visits, urgent care, and primary care visits.

In obstetrics, the pandemic accelerated a gradual shift to fewer in-person prenatal visits. Typically, pregnancy involves 14 in-person visits. Some models now recommend eight or fewer, said Dr. Nathaniel DeNicola, chair of telehealth for the American College of Obstetricians and Gynecologists. A study found no significant differences in rates of cesarean deliveries, preterm birth, birth weight, or admissions to the neonatal intensive care unit between women who received up to a dozen prenatal visits in person and those who received a mix of in-person and virtual visits.

Contraception is another area where less may be more, DeNicola said. Patients can discuss the pros and cons of different options virtually and may need to schedule a visit only if they want an IUD inserted.

If Something Is New, or Changes

When a new symptom crops up, patients should generally schedule an in-person visit. Even if the patient has a chronic condition like diabetes or heart disease that is under control and care is managed by a familiar physician, sometimes things change. That usually calls for a face-to-face meeting too.

“I tell my patients, ‘If it’s new symptoms or a worsening of existing symptoms, that probably warrants an in-person visit,’” said Dr. David Cho, a cardiologist who chairs the American College of Cardiology’s Health Care Innovation Council. Changes could include chest pain, losing consciousness, shortness of breath, or swollen legs.

When patients are sitting in front of him in the exam room, Cho can listen to their hearts and lungs and do an EKG if someone has chest pain or palpitations. He’ll check their blood pressure, examine their feet to see if they’re retaining fluid, and look at their neck veins to see if they are bulging.

But all that may not be necessary for a patient with heart failure, for example, whose condition is stable, he said. They can check their own weight and blood pressure at home, and a periodic video visit to check in may suffice.

Video check-ins are effective for many people whose chronic conditions are under control, experts said.

When someone is undergoing treatment for cancer, certain pivotal moments will require a face-to-face meeting, said Kamal, of the American Cancer Society.

“The cancer has changed or the treatment has changed,” he said. “If they’re going to stop chemotherapy, they need to be there in person.”

And one clear recommendation holds for almost all situations: Even if a physician or office scheduler suggests a virtual visit, you don’t have to agree to it.

“As a consumer, you should do what you feel comfortable doing,” said Dr. Joe Kvedar, a professor at Harvard Medical School and immediate past board chairman of the American Telemedicine Association. “And if you really want to be seen in the office, you should make that case.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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New Book Explores Why Medicine Doesn’t Always Work

Jan. 31, 2023 –In How Medicine Works and When It Doesn’t, F. Perry Wilson, MD, guides readers through the murky and often treacherous landscape of modern medicine. The book could well have been titled Marcus Welby Doesn’t Live Here Anymore. In Wilson’s view, Americans no longer trust their doctors the way they once did, and that lack of trust can have life-threatening consequences.

But patients aren’t to blame. Wilson – a kidney specialist at Yale University and a frequent contributor to Medscape, the sister company of WebMD – explains how charlatans have managed to blur the line between quackery and solid science-based advice, leaving Americans in a relentless tug-of-war for their attention, dollars, and, ultimately, their well-being. 

Meanwhile, he argues, doctors have created a “vacuum” for misinformation to fill by not working hard enough to build relationships of trust with their patients. Crucially, he says, that means being transparent with people, even when the answer to their question is “I don’t know.” Certainty may be reassuring, but it’s the exception in medicine, not the rule. Anyone who says otherwise – well, they’re selling something.

The good news, according to Wilson, is that with the right tools, people can immunize themselves against misinformation, inflated claims, and bogus miracle cures.

Below is an excerpt from How Medicine Works and When It Doesn’t: Learning Who to Trust to Get and Stay Healthy (copyright 2023 by F. P. Wilson, MD. Reprinted with permission of Grand Central Publishing).

How Medicine Works and When It Doesn’t

I lost Ms. Meyer twenty-five minutes into her first visit.

Doctors are often a bit trepidatious meeting a patient for the first time. By the time we open the door to the exam room, we’ve read through your chart, looked at your blood work, and made some mental notes of issues we want to address. Some of the more sophisticated practices even have a picture of you in the electronic medical record, so we have a sense of what you look like. I usually take a beat before I open the door, a quick moment to forget my research lab, my paperwork, a conversation with a coworker, to turn my focus to you, the patient, waiting in that room. It is my hope, standing just on the other side of an inch of wood, that you and I will form a bond, or, more aptly, a “therapeutic alliance.” I’ve always liked that term – the idea that you and I are on the same side of some great war, that together we can overcome obstacles. But that alliance doesn’t come easily. And lately, it has been harder to forge than ever.

Ms. Meyer was standing in the center of the room, arms crossed. Smartly dressed and thin, she lived in one of the affluent Philadelphia suburbs – on “the Main Line” – and it showed, in her subtle but clearly expensive jewelry as well as her demeanor. She looked out of place in my resident-run medical clinic, which primarily catered to less wealthy inhabitants of West Philadelphia. But what struck me most was the emotion that radiated from her. Ms. Meyer was angry. “What brought you here today?” I asked her, using my standard first question. Later in my career, I would learn to replace that line with something more open: “How can I help you?” or even “Tell me about yourself.” But it hardly mattered.

She was exhausted, she said. Almost no energy. So drained she could barely get out of bed. Unable to focus during the day, she tossed and turned all night and repeated the cycle day in and day out. It was, she said, simply untenable. I asked how long it had been happening.

“Months,” she said. “Years, actually. You are literally the sixth doctor I’ve seen about this.” Her anger broke to reveal desperation. Second opinions are common enough in medical practice. Third opinions, for difficult cases, are not unheard of. But I had never been a sixth opinion before, and I felt immediately uncomfortable. Notbecause I wasn’t confident in my diagnostic abilities – like all young doctors I hadn’t yet learned how much I didn’t know – but because I was worried that whatever thoughts I had about her possible ailment would not be enough. What could I offer that all these others couldn’t?

I kept my poker face firmly intact and waited.

Eleven seconds. That’s how long the typical doctor waits before interrupting a patient, according to a study in the Journal of General Internal Medicine. Determined to not be a typical doctor, I let her talk, in her own words and in her own time. I thought my attentive listening would frame our relationship differently – that she might see me as a physician who was conscientious, methodical. But it backfired. It was clear she resented the fact that she had to relay the same information to me that she had already told to the five doctors that came before me.

One of the most important skills a doctor has is to read the room. So I switched from respectful listening to diagnosing. I tried to troubleshoot symptoms of possible thyroid dysfunction, anemia, sleep apnea, lymphoma and other cancers. I asked about her family history, her history of drug or alcohol abuse, her sexual history. I even made sure I didn’t miss questions pertaining to pregnancy, because (this one comes from experience) you should never assume someone isn’t pregnant. I reviewed her lab work: Pages upon pages of blood and urine tests. Even CT scans of the head, chest, abdomen, and pelvis. Nothing was out of order. Nothing that we can measurein a lab or in the belly of a CT scanner, at least.

But her affect was off, and her mood was sad. Ms. Meyer seemed, frankly, depressed. There is a formal way to diagnose major depressive disorder; a patient must display five of nine classic symptoms (such as loss of interest in activities they used to enjoy, fatigue, or weight changes). Ms. Meyer had eight of nine, a clear-cut case of major depression, according to the diagnostic manuals. But was it depression? Or was it something else, and the frustration of living with that something else had led to depression?

The nine classic symptoms are far from the only way depression can manifest. As a disease that lives in the brain, the symptoms can be legion – and can lead doctors and patients on costly, and often fruitless, wild-goose chases.

“Listen,” I said, “not everything is super-clear-cut in Medicine. I think part of this might be a manifestation of depression. It’s really common. Maybe we should try treating that and seeing if your energy improves.”

Right there. That’s when I lost her.

I could tell from the set of her jaw, the way her eyes stopped looking directly at mine and flickered off a bit, centering on my forehead. I could tell from her silence, and from the slight droop in her posture, that she had lost hope. We talked some more, but the visit was over. There would be no therapeutic alliance. I asked her to call the number on the back of her insurance card to set up a consultation with a mental health professional and made her a follow-up appointment with me in a month, which she, unsurprisingly, missed. My rush to a diagnosis – in this case a diagnosis that comes with a stigma (unwarranted, but a stigma nonetheless) – drove her away from both me and from conventional medicine. And had she even heard a diagnosis at all? Or had she heard, like so many women have about so many concerns over so many years, “It’s all in your head”?

I didn’t see her for another year. When I did, she was having a seizure in the emergency room, the result of a “water cleanse,” anaturopathic practitioner had prescribed. Forcing herself to drink gallons of water a day, she had diluted the sodium content in her blood. When her sodium level got too low, her brain could not appropriately send electrical signals, and seizures ensued. She would survive, thankfully, and tell me later that she had never feltbetter. She had been told all her problems were due to heavy metal toxicity. (Lab work would not confirm this.) This diagnosis had led her into a slew of questionable medical practices, including regular “cleanses” and chelation therapy – where substances similar to what you might find in water softening tablets are injected into the blood to bind harmful metals. Chelation therapy runs around $10,000 to $20,000 per year and is not covered by insurance.

The striking thing was that she positively shone with confidence and hope. Lying in a hospital bed, recovering from life-threatening seizures, she was, in a word, happy.

And I felt … Well, to be honest, I think the emotion I felt was jealousy. It would be one thing if no one could help poor Ms. Meyer, depressed and unwilling to even entertain the diagnosis, but someone did help her. Someone whose worldview was, in my mind, irrational at best and exploitative at worst. My instinct was to dismissMs. Meyer as another victim of an industry of hucksters, as a rube. She had been taken in with empty promises and false hope, and some grifter had extracted cash from her in the manner of televangelists and late-night psychic hotlines. His “treatment” landed herin the emergency room with generalized tonic-clonic seizures that could have killed her. This was bad medicine, plain and simple.

But – and this “but” was why I continue to think about Ms. Meyer – in the way that mattered to her, she got better. The huckster helped.

It took me a long time to figure out why – fifteen years, actually. In that time, I finished my residency and fellowship at the University of Pennsylvania. I got a master’s degree in clinical epidemiology (the study of how diseases affect a population). I was brought ontothe faculty at Yale University and started a research lab running clinical trials to try and generate the hard data that would really save lives. I became a scientist and a researcher, and a physician caring for the sickest of the sick. I lectured around the world on topics ranging from acute kidney injury to artificial intelligence and published more than one hundred peer-reviewed medical manuscripts. And yet, somehow, I knew that all the research studies I did would be for nothing if I couldn’t figure out how I – how Medicine – had failed Ms. Meyer and all the people out there who feel abandoned, ignored by the system, or overwhelmed by medical information.

Why were people turning to their family and friends or social media for medical advice when physicians are willing and able to provide the best possible information? Was it simply the cost of healthcare? Or was something deeper going on? And though it took time, what I figured out will shine a light on why doctors have lost touch with their patients, why patients have lost faith in their doctors, and how we can get back to that therapeutic alliance that we all need in order to be truly healthy. That is what this book is all about.

It turns out the most powerful force in Medicine is not an antibiotic. It isn’t stem cell therapy, genetic engineering, or robotic surgery. The most powerful force in Medicine is trust. It is the trust that lives between a patient and a physician, and it goes both ways. I trust you to tell me the truth about how you feel and what you want. You trust me to give you the best advice I can possibly give. We trust each other to fight against whatever ails you, physical or mental, to the best of our abilities. Ms. Meyer did not trust me. That was my failure, not hers. And that personal failure is a mirror of the failure of Medicine writ large – our failure to connect with patients, to empathize, to believe that their ailment is real and profound, and to honestly explain how medical science works and succeeds, and why it sometimes doesn’t. We doctors have failed to create an environment of trust. And into that vacuum, others have stepped.

It’s not entirely doctors’ fault, of course. The average primary care physician has less than fifteen minutes to conduct a typical new-patient visit. If the doctor doesn’t stick to that time, the practice will go out of business – overwhelmed by payments for malpractice insurance, overhead, and dwindling reimbursements from insurers. It’s hard to create trust in fifteen minutes. Combine our limited schedules with a seemingly unfeeling healthcare system, which sometimes charges thousands of dollars for an ambulance ride to the hospital and tens of thousands of dollars for even routine care, and it is no wonder why, according to a study in the New England Journal of Medicine, trust in physicians is lower in the United States than in twenty-three other economically developed countries.

While the healthcare system and physicians are not synonymous, physicians are the face of that system. In earlier times, we ran that system. It is no longer the case. Most physicians haven’t realized this yet, but we are no longer a managerial class. We are labor, plain and simple, working for others who, without medical training but with significant business acumen, use our labor to generate profit for companies and shareholders. Part of the key torestoring trust between patients and doctors is for all of us to start fighting to reform the system. And doctors should be on the front line of that battle.

There is a right way and a wrong way to earn someone’s trust.One key lesson in this book is that it takes a keen observer to tell thedifference. Honesty, integrity, transparency, validation: These are good ways to create trust, and physicians need to commit to them wholeheartedly if we ever want our patients to take us seriously. Patients need to commit to honesty and transparency as well, even when the truth is painful. But less-than-scrupulous individuals can also leverage certain cognitive biases to create trust in ways that are manipulative. Trust hacking like this is a central reason modern medicine has lost ground to others who promise a quick fix for what ails you. It’s important not only to evaluate your own methods, but also to be able to spot whether someone is trying to earn your trust in an ethical way, to spot bad actors whose intentions may have little to do with actually helping you.

There are several ways to hack trust. One is to give an impression of certainty. The naturopath who treated Ms. Meyer was unambivalent. He told her exactly what was wrong with her: heavy metal toxicity. There was no long list of potential alternative diagnoses, no acknowledgment of symptoms that were typical or atypical for that diagnosis. He provided clarity and, through that, an impression of competence. To know who you can truly trust, you have to learn to recognize this particular trick – you have to be skeptical of people who are overly certain, overly confident. Health is never clear-cut; nothing is 100 percent safe and nothing is 100 percent effective.

Anyone who tells you otherwise is selling something. This book will show you how to grapple with medical uncertainty and make rational decisions in the face of risk.

Traditional doctors like me are trained early on to hedge their bets. Patients hate this. Ask a doctor if the medication you are being prescribed will work, and they will say something like “For most people, this is quite effective” or “I think there’s a good chance” or (my personal pet peeve) “I don’t have a crystal ball.” This doctorly ambivalence is born out of long experience. We all have patients who do well, and we all have patients who do badly. We don’t want to lie to you. We’re doing the best we can. And, look, I know that this is frustrating.

Neil deGrasse Tyson, the astronomer and brilliant science communicator, once wrote, “The good thing about Science is that it’s true, whether or not you believe in it.” When it comes to the speed of light, the formation of nebulae, and the behavior of atoms, this is true. The laws of the universe are the laws of the universe; they “change” only insofar as our tools to study them have improved. But Medicine is not astrophysics. It is not an exact science. Or if it is, we have not yet explored enough of the nooks and crannies of the human machine to be able to fix it perfectly.

Physicians, if we are being honest, will admit that their best advice is still a guess. A very good guess – informed by years of training and centuries of trial and error. But we are still playing the odds. Trust hackers, though, are never so equivocal. Ask your local homeopath how to cure your headaches, and you will be told they have just the thing.

You can also hack trust by telling people what they want to hear. For someone who is sick, tell them they will be cured. For someone who is dying, tell them they will live. For someone who feelsa stigma surrounding their depression, tell them it is not their own brain, but an external toxin, that is wreaking havoc. To know who to trust with your health, you need to first know yourself. You need to know, deep down, what you want to be true. And be careful of those who tell you it is true.

This skill, consciously avoiding the cognitive bias known as “motivated reasoning” (the tendency to interpret facts in a way that conforms with your desired outcome), is challenging for all of us – doctors included. But it is probably the most critical skill to have ifyou want to make the best, most rational choices about your health. The answer you are looking for might not be the right answer. That’s why we will discuss, right in the first chapter, how before you know who else to trust, you have to learn to trust yourself.

The community of people vying for your trust is truly massive. It spans individuals from your neighbors and your friends on social media to the talking heads on the nightly news. All of them are competing in a trust marketplace, and not all of them are playing fair. A smattering of recent headlines illustrates the overwhelming amount of medical-sounding “facts” you may have been exposed to: coffee cures cancer; depressed mothers give birth to autistic children; marijuana is a gateway to opiate abuse; eggs increase the risk of heart disease; eggs decrease the risk of heart disease. Each day, we are inundated with confusing and conflicting headlines like these, designed more to shock, sell, and generate clicks than to inform. I will give you the skills to figure out what health information can be trusted and what is best left unliked and unretweeted.

The information age brought with it the promise of democratization of truth, where knowledge could be accessed and disseminated at virtually no cost by anyone in the world. But that promisehas been broken. Instead, the information age has taught us that data is cheap but good data is priceless. We are awash in bad data, false inference, and “alternative facts.” In that environment, we are all – doctors and patients alike – subject to our deepest biases. We are able to look for “facts” that fit the narrative of our lives, and never forced to question our own belief systems. If we can’t interrogate the quality of the information we’re consuming, we can’t make the best choices about our health. It’s that simple.

When you read this book, you’ll learn that doctors aren’t perfect. As humans, we have our own biases. Rigorous studies have shown that those biases lead to differential treatment by race, sexual orientation, and body mass index. While most physicians are worthy of your trust, not all of them are. I’ll teach you how to recognize those who aren’t putting your interests first.

It’s not wrong to be skeptical of Medicine. Medical science has been developing, evolving, and advancing for the past one hundred years, and has had many stumbles along the way. Scandals from the repressing of information about harms linked to Vioxx (a drug that was supposed to relieve pain), to the effects of thalidomide in pregnancy (which was designed to reduce nausea but led to severe birth defects), to the devastating heart problems caused by the diet pill fen-phen remind us that the profit motive can corrupt the bestscience. Alleged frauds like the linking of the measles, mumps, and rubella (MMR) vaccine to autism diagnoses pollute the waters of inquiry, launch billion-dollar businesses, and leave the public unsure of what to really believe.

Why would I, a physician and researcher, highlight the failures of medical research? Because Medicine isn’t perfect or complete. It is also, in terms of the alleviation of human suffering, the single greatest achievement of humankind. But you need to understand Medicine, warts and all, to make the right choices about your own health. We must be skeptical, but never cynical.

This book will also detail some of the astounding successes and breakthroughs that medical science has made possible. For the vast majority of human history, life-or-death issues were determined by randomness or chance. Maybe it was a broken bone that prevented someone from hunting and gathering, or a cut on the arm that got infected, or a childbirth that developed complications for the mother and her child. It’s no mystery why before the modern era, one in four babies died before their first birthday. And those who survived their first year had only a fifty-fifty chance of reaching adulthood. These days, the script has been flipped. Ninety-five percent of humans born on Earth today will reach adulthood, and life expectancy has more than doubled in the last two hundred years. We’ve witnessed the near eradication of diseases like smallpox, rubella, and polio, which would have easily killed or disabled our ancestors, and we’ve achieved major advances in drug treatment and medical procedures that can prolong our lives despite the onset of deadly diseases. Medical science, translated from lab bench to bedside to the doctor’s prescription pad, has been nothing short of miraculous. It has transformed the human experience from lives that are, to steal from Thomas Hobbes, “nasty, brutish and short,” to the lives we live today, which, while not without their troubles, would be unrecognizable to our ancestors.

Here we stand, in the midst of a torrent of information that would have been inconceivable thirty years ago. Some of it is good, some is bad, but all is colored by our own biases and preconceptions. Decisions about your health happen every single day. If you want to be in control, you need to know how to separate the good from the bad, whether it comes from someone sitting atop the ivory tower, or from your friend on Facebook. This book is about medical science. But it’s really about learning to trust again. When you finish reading it, you will no longer be swayed by the loudest voice, the most impassioned plea, or the most retweeted article. You will be able to trust your doctor, trust yourself, and trust Medicine – our imperfect science and the single greatest force for good in the world today.

Excerpted from the book How Medicine Works And When It Doesn’t: Learning Who to Trust to Get and Stay Healthy by F. Perry Wilson, MD. Copyright 2023 by F. P. Wilson, MD. Reprinted with permission of Grand Central Publishing. All rights reserved.

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