It’s been two decades since we established effective treatment against HIV, rendering what was nearly always a fatal infection to a chronic, manageable condition.

I remember one of the first AIDS patients I met as a medical student in the mid-90s: Harry, a young man losing his sight from an opportunistic infection called CMV retinitis. We had only one drug we could give him to try to stop him from going blind.

Ganciclovir was horrible. Given intravenously, it burned at the infusion site, made him severely nauseous, and caused his already-low blood count to fall. On top of all that, it didn’t work very well.

Days after we discharged him from the hospital, Harry was readmitted with pneumonia caused by Pneumocystisand died. He was 32 years old.

In those years, we saw many patients in the hospital with complications from HIV. They had unusual malignancies like Kaposi’s sarcoma, and other opportunistic infections like toxoplasmosis that we never see in patients with intact immune systems.

In extreme cases, patients simply wasted away, physically and mentally, from AIDS.

Then protease inhibitors were introduced in 1996, and almost overnight the death rate from AIDS plummeted. Now people could live with HIV rather than die from it. Patients with AIDS disappeared from our teaching hospital wards. HIV had become an “outpatient problem.”

Antiretroviral therapy keeps the viral load suppressed in patients infected with HIV. This means not only that they stay healthy, but also are much less likely to transmit the virus to others.

Fortunately, the cocktail of three different medications taken to keep HIV in check, which include a protease inhibitor like darunavir and the newer integrase inhibitors like dolutegravir, have become better tolerated over the years. Today the life expectancy for someone who is HIV-positive is about the same as for someone without HIV — as long as they are able to stay on their medication.

For many, though, there are still significant barriers to care that make the not-so-simple act of adhering to a medication regimen near impossible.

Chief among them is access to care. Especially in rural areas, it remains difficult to find practitioners up to date with the latest information in HIV care. In addition, stigma associated with HIV diagnosis and treatment continues to be a formidable barrier to getting care, regardless of location.

Carmel was a patient I cared for years after Harry. She’d been abused as a youngster, which understandably put her in a dark place emotionally. She was isolated from her family, and struggled with drug addiction over the years.

Her HIV eventually progressed to full-blown AIDS because of many fits and starts with her antiretroviral treatment. When I met her, she’d lost her ability to walk due to an opportunistic infection called cryptococcal meningitis.

After three years with numerous hospital admissions, Carmel died. To me, it seemed especially tragic because I knew we had the medical tools to nurse her toward health. But we were unable to cross the psychosocial chasm that Carmel lived beyond to effectively engage her in care.

Even with effective medications, only half of the 1.1 million Americans living with HIV have an undetectable viral load. But this represents progress, as does the fact that 85 percent of Americans infected with HIV are aware of their status, according to the Centers for Disease Control and Prevention.

These are all-time highs, but show that there is still work to be done.

It’s worth remembering that strong, sometimes militant advocacy is what pushed us forward in how we diagnose and treat HIV. Scientific, medical, and social progress occurred more rapidly with HIV than with any other condition before it.

AIDS activism pushed the research agenda forward, and brought truly holistic care to people diagnosed with HIV. The care model we use for HIV-positive persons is an ideal model for how we could care for everyone—thinking not just about the medical aspects per se, but also about nutrition, medication adherence, transportation, mental health and overall wellbeing.

In Oklahoma, where I practice, the stigma surrounding HIV is still palpable. Fortunately, an organization called Tulsa Cares has blossomed to provide case management and psychosocial and nutritional support to people with HIV and their loved ones. This vastly increases the likelihood that patients will get into treatment and stay with it.

Advocacy for HIV is what led to the dramatic improvements in our ability to care for the illness. On this 30^th anniversary of World AIDS Day, let’s remember what a difference holistic care has made for people with HIV and how amazing it would be if such a model spread to all corners of health care.

John Henning Schumann is an internal medicine doctor and serves as president of the University of Oklahoma’s Tulsa campus. He also hosts Studio Tulsa: Medical Monday on KWGS Public Radio Tulsa. You can follow him on Twitter: @GlassHospital.

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This week, Colorado became the first state to notify families that children who receive health insurance through the Children’s Health Insurance Program are in danger of losing their coverage.

Nearly 9 million children are insured through CHIP, which covers mostly working-class families. The program has bipartisan support in both the House and Senate, but Congress let federal funding for CHIP expire in September.

The National Governor’s Association weighed in Wednesday, urging Congress to reauthorize the program this year because states are starting to run out of money.

In Virginia, Linda Nablo, an official with the Department of Medical Assistance Services, is drafting a letter for parents of the 66,000 Virginia children enrolled in CHIP.

“We’ve never had to do this before,” she says. “How do you write the very best letter saying, ‘Your child might lose coverage, but it’s not certain yet. But in the meantime, these are some things you need to think about.’ “

Children may be able to enroll in Medicaid, get added to a family plan on the Affordable Care Act’s health exchange, or be put on an employer health plan. But the options vary by state and could turn out to be very expensive.

If Congress reauthorizes CHIP funding, states are in the clear. But they can’t bank on it yet, and states have to prepare to shut down if the funding doesn’t come through. Virginia would have to do so on January 31, 2018.

“We’re essentially doing everything we would need to shut down the program at the end of January,” Nablo says. “We’ve got a work group going with all the different components of this agency, and there are many.”

For example, they will need to reprogram their enrollment systems, inform pediatricians and hospitals, and train staff to deal with an onslaught of confused families.

Joan Alker, who runs the Georgetown University Center for Children and Families, says most states need to give families 30 days’ notice.

“But [state officials] are hearing rumors that Congress might get this done in the next couple of weeks and they don’t want to scare families,” she says. “States are really in a bind here, it’s very tough to know what to do.”

Colorado was the first to send out a notice and other states are close behind. There are a handful that are starting to run out of money in December, Alker says, such as Oregon, Minnesota and the District of Columbia.

The exact deadline for when CHIP funding runs out in each in each state is tricky to calculate, because the amount of money they have depends on how fast states spend it — and how much stopgap help the federal government gives them.

Some states are getting creative. Oregon just announced it will spend state money to keep CHIP running, says Alker, “And they’re assuming that Congress will pass it and they’re get reimbursed retroactively. That’s what they’re hoping.”

Texas is set to run out of CHIP funds a lot sooner than was expected just a few months ago. And there’s a big reason for that: Hurricane Harvey, says Laura Guerra-Cardus with the Children’s Defense Fund in Austin.

“Natural disasters are often a way that individuals that never had to rely on programs like Medicaid and CHIP need them for the first time,” she says.

Guerra-Cardus says after Harvey, a lot of new families enrolled in CHIP and there was also a higher demand for services. “When there is such a traumatic event, health care needs also rise. There’s been a lot of post-traumatic stress in children,” she says.

And to help those families out, Texas officials also waived fees they usually have to pay to join CHIP. So, lately there’s been less money coming in and more money going out. Like Virginia, without reauthorization, Texas would have to shutter CHIP by the end of January.

For Amy Ellis in Alpine, Texas, that’s something she’s dreading. “Losing a lot of sleep,” she says. “Still losing a lot of sleep.”

Ellis has an 8-year-old daughter who has been on CHIP since she was born.

She has asthma and allergies. Ellis says health insurance is really important because her family doesn’t make a lot of money. Her daughter’s allergy medicine is expensive.

Ellis lives in rural West Texas, nearly four hours southeast of El Paso and “three hours from the closest city,” she says.

The isolation means that Ellis doesn’t have a lot of options other than CHIP, she says. One would be enrolling her daughter in the insurance plan she and her husband have through the Affordable Care Act marketplace, but Ellis says that would be expensive.

“It would cost $300 to $400 a month for us to add her to our plan, which would be a huge chunk of our income,” she says. “That’s our grocery money and our gas money.”

A lot of families in Texas could find themselves in the same situation if Congress doesn’t act soon, says Guerra-Cardus. “Kids with chronic or special health care needs, this is going to turn their lives absolutely upside down.”

Roughly 450,000 children are covered by CHIP in Texas. Officials say they are asking the federal government to give them money that will keep CHIP alive through February.

But because officials must give families 30 days’ notice if the program will end, families in Texas could get letters right around Christmas that say their children are losing their health insurance.

This story is part of a reporting partnership with NPR, local member stations and Kaiser Health News. Selena Simmons-Duffin is a producer at NPR’s All Things Considered, currently on an exchange with Washington, D.C. member station WAMU.

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As President Trump talked tax overhaul on Capitol Hill Tuesday, Arkansas patient advocate Andrea Taylor was also meeting with lawmakers and asking them to save a corporate tax credit for companies that develop drugs for rare diseases.

Taking the credit away, Taylor said, “eliminates the possibility for my child to have a bright and happy future.”

Taylor, whose 9-year-old son, Aiden, has a rare connective tissue disorder, spoke as part of a small rally organized this week by the National Organization for Rare Disorders — the nation’s largest advocacy group for patients with rare diseases.

Earlier this month, House Republicans proposed eliminating the orphan drug tax credits, which Congress passed as part of a basket of financial incentives for drugmakers in the 1983 Orphan Drug Act. The law, intended to spur development of medicines for rare diseases, also gives seven years of market exclusivity for drugs that treat a specific condition that affects fewer than 200,000 people.

The Senate Finance Committee, led by Sen. Orrin Hatch, R-Utah, put the tax credit back into the tax legislation. After some negotiations, the committee settled on reducing the credit to 27.5 percent of the costs of preapproved clinical research, compared with the current 50 percent. The committee also restored a provision that would have eliminated any credits for drugmakers who repurpose a mass-market drug as an orphan.

Today, many orphan medicines treat more than one condition and often come with astronomical prices. Many of the medicines aren’t entirely new, either. A Kaiser Health News investigation, which was also aired and published by NPR, found that more than 70 of the roughly 450 individual drugs given orphan status were first approved for mass-market use, including cholesterol blockbuster Crestor, Abilify for psychiatric conditions, cancer drug Herceptin and rheumatoid arthritis drug Humira, which for years was the best-selling medicine in the world.

More than 80 other orphans won Food and Drug Administration approval for more than one rare disease and, in some cases, multiple rare diseases, the KHN investigation showed.

“As with any major reform, tough choices have to be made,” a Hatch spokesperson wrote in an emailed statement, adding that the senator will continue to work “to make the appropriate policy decisions” to deliver a comprehensive tax overhaul.

Hatch, who is a member of a rare-disease congressional caucus, received $102,600 in campaign contributions from pharmaceutical and related trade group political action committees in the first half of 2017, making him the top recipient of pharmaceutical cash in the Senate.

If the Senate provision remains untouched, reducing the tax credit would save the federal government nearly $30 billion over a decade, according to a markup of the bill released late last week.

Orphan drug development has become big business in recent years and advocates as well as critics of the industry say tax credits have been an important motivation for companies. Orphan drugs accounted for 7.9 percent of total U.S. drug sales in 2016, according to a report released by QuintilesIMS and NORD.

Because patient populations for rare-disease drugs are relatively small, companies often charge premium pricing for the medicines. EvaluatePharma, a company that analyzes the drug industry, estimates that among the top 100 drugs in the U.S. the average annual cost per patient for an orphan drug was $140,443 in 2016. Giant pharmaceutical companies such as Celgene, Roche, Novartis, AbbVie and Johnson & Johnson have led worldwide sales in the orphan market, according to EvaluatePharma’s 2017 Orphan Drug Report.

Jonathan Gardner, U.S. news editor for EvaluatePharma, said the orphan drug tax credit is “probably the most important incentive for developing an orphan drug.” Cutting the credit will force even the large companies to question development of drugs for rare diseasess, Gardner said.

Dr. Aaron Kesselheim, an associate professor of medicine at Harvard Medical School, has been critical of the Orphan Drug Act’s incentives and of companies taking advantage of the law’s financial incentives for profit. But he warned against rushing to eliminate the tax credit.

“We need to think about ways we can improve the Orphan Drug Act and stop people from gaming the system and exploiting it,” Kesselheim said. But there “are a lot of rare diseases that don’t have treatments. So, we need to be careful in making changes.”

The battle over the tax credit is the latest controversy for the FDA’s orphan drug program. FDA Commissioner Scott Gottlieb announced a “modernization” plan for the agency this summer, closing a pediatric testing loophole and eliminating a backlog of corporate applications for orphan drug status. And, this week, the agency confirmed that Dr. Gayatri Rao, director for the Office of Orphan Products Development, is leaving.

Meanwhile, the Government Accountability Office confirmed this month that it recently launched an investigation of the orphan drug program. The GAO’s review was sparked by a letter from top Republican Sens. Hatch, Chuck Grassley, R-Iowa, and Tom Cotton, R-Ark., asking the agency to investigate whether drugmakers “might be taking advantage” of the drug approval process.

The pharmaceutical industry has had a muted response to the tax bill, which includes a corporate tax cut. The powerful industry lobbying group PhRMA said it is pleased Congress is looking at overhauling the tax code but “encourages policymakers to maintain incentives” for rare diseases. BIO, the Biotechnology Innovation Organization that represents biomedical companies, said it was “gratified” the Senate committee chose to partially retain the credit but would prefer to keep the existing incentive.

The group that rallied Tuesday — wearing bright-orange shirts that read “Save the Orphan Drug Tax Credit” — planned to meet with a couple of dozen lawmakers, including Grassley, who is a member of the Senate Finance Committee. NORD, like many patient advocacy groups, receives funding from pharmaceutical companies but the organization’s leaders say the industry does not have members on the board and does not dictate how general donations are spent.

On Tuesday, NORD leaders said they are open to discussions about the tax credit, and whether the overall law is working as intended. “We’re here to have that conversation; we’re ready to have that conversation,” said Paul Melmeyer, director of federal policy for NORD. “Sadly, that’s not the conversation we are having today.”

Abbey Meyers, a founder of NORD and the leading advocate behind passing the initial 1983 law, said she fears the high cost of the drugs will make it impossible to sustain the orphan drug program. Now retired, Meyers said she has followed the law’s success over the years and believes the tax credit should not be changed.

“There are other things that have happened since the law was passed where there wasn’t any logic to what they did,” Meyers said, adding “because somebody went to a senator and they put into the law.”

Kaiser Health Newsis a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundationthat is not affiliated with Kaiser Permanente.

KHN’s coverage of prescription drug development, costs and pricing is supported by the Laura and John Arnold Foundation. Dr. Aaron Kesselheim’s work is also supported by the foundation.

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An investigation by New York’s attorney general found that the Brooklyn Hospital Center improperly billed dozens of patients for the cost of forensic rape exams.

The exams, known as rape kits, are required by state law to be free of cost to patients. Attorney General Eric Schneiderman’s office said Tuesday that between January 2015 and February 2017, the hospital conducted 86 forensic rape exams. It billed the patient or her insurance plan in 85 of those cases, without revealing that the exam could be free.

Schneiderman said he launched the investigation after one victim complained that she had been billed seven times for a forensic rape exam performed at the hospital’s emergency room. After receiving the initial bill, the patient contacted a victim’s assistance organization, which reached out to the state’s Office of Victim Services, which told the hospital that the state should be billed. A month later, the patient got a bill from a collection agency.

“These kits are used on what is undoubtedly one of the worst days of a survivor’s life,” Schneiderman told The Associated Press. “The absolute last thing they should have to worry about is how they’ll pay for their care at the hospital. But we have found contrary to law that way too often they do have to worry.”

Schneiderman said the state had reached a settlement with the Brooklyn hospital, which dictates that the hospital maintain a Sexual Assault Victim Policy that prevents improper billing and provide full restitution to those who should not have been billed. He said he had also sent letters to 10 other hospitals in the state, seeking information on their policies.

The Violence Against Women Act, reauthorized by Congress in 2005, requires that the full out-of-pocket costs of sexual assault medical forensic exams be covered by a state or other entity, as a condition of receiving federal grants through a program called STOP. That program provides funding for law enforcement and prosecutions in combating violence against women as well as for victim services. Victims cannot be required to file law enforcement reports to receive free exams.

New York is not the only place where victims have been improperly billed. CBS News reported in 2014 that victims in 13 states said they had been billed for medical services related to a sexual assault. A victims’ advocate organization in Chicago told CBS it got as many as six calls a month from rape victims who had been wrongly billed.

In 2014, the Urban Institute published a study on how the funding for sexual assault exams is handled by states. “In practice, each state (or local jurisdiction, in the case of non state-level paying systems) decides what it will cover as part of the free exam,” the report found. “Some states cover only what is required by federal mandate, and other states provide more free services to victims.”

The report’s authors explain that VAWA 2005 dictates that such exams should, at minimum, include:

• Examining physical trauma
• Determining penetration or force
• Interviewing the patient
• Collecting and evaluating evidence

But the victim may require medical services for treatment relating to an injury, pregnancy or sexually transmitted infections. Whether and how those expenses are covered varies by state, and some victims are billed for the additional services.

The Urban Institute study found that crime victim compensation funds were the primary funding sources for the exams in most states, rather than federal STOP grants.

And, the report said, there are issues with using victim compensation funds to pay for rape kits:

“Victim compensation is intended to pay for services that directly benefit victims. … The most common types of expenses compensated are medical and dental services, mental health counseling, lost wages, and funeral or burial expenses. It is clear that the medical services provided in an exam directly benefit victims and are in keeping with the mission of compensation.

“However, some have questioned—through this study and otherwise—whether funds intended to benefit victims should be used to pay for forensic evidence collection intended to build a criminal case. Is forensic evidence collection a benefit to victims, or is it a benefit to the justice system? Victims who have had negative experiences with the justice system might say that it is no benefit to victims at all. No other evidence collection activities (such as autopsies, crime scene processing, and ballistics analysis) are paid for with funds meant for services to victims.”

New York’s Office of Victim Services covers the cost of emergency care for survivors of sexual assault. The attorney general’s office said it did not have details on how the victim services office funded its programs.

Ariel Zwang, CEO of victim assistance organization Safe Horizon, welcomed Schneiderman’s announcement.

“Rape survivors deserve expert and immediate medical care after an assault, including access to a rape kit,” she said in a statement Tuesday. “For so long, survivors and victim advocates fought to change the law so that survivors would not incur the cost of these important exams. We applaud the Attorney General’s office for ensuring enforcement of this law, holding hospitals accountable who have unnecessarily charged for this exam, and standing up for survivors.”

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In Caguas, south of San Juan, Puerto Rico, Jared Haley is fighting a daily battle at C-Axis, the medical device manufacturer where he’s the general manager. The power has been out at his plant for nearly three months, since Hurricane Irma.

Operating on emergency generators, the plant restarted operations last month and, Haley says, is delivering all its work on schedule. But he’s not happy now with the plant’s condition. Walking into his factory, he laments, “This shop used to look like a doctor’s office.”

Not now. Walking through the plant, the damage from Hurricane Maria is still evident. Hurricane Maria caused extensive roof damage and flooding. Many ceiling panels are missing. A temporary roof installed after the storm is still leaking.

By the time Haley and some of his employees got back days after the storm, heat and humidity had damaged much of his equipment. He says, “We have brand-new, $500,000 pieces of equipment that now look like they’re 100 years old. Everything rusted on them.”

C-Axis makes parts on contract for some of the big medical device companies. It uses its computer operated milling machines to make parts out of titanium, stainless steel and plastic. “This machine makes bone screws and anchors,” he says. In another part of the shop, he examines finished components that will go into a 13-part assembly.

“That assembly is used in bypass surgery for the harvesting of the vein in the leg,” he says.

Because Caguas is in the mountains, cell phone service in the area has remained spotty since Maria. Many of Haley’s employees were hit hard in the storm, and some have left the island. Haley estimates he’s lost more than 10 percent of his workers.

“We’ve been trying to hire in this climate, which is very interesting,” Haley says. “There’s no communication, no phone. How do you get employees? We just made a sign and put it outside that says ‘Now Hiring.’ “

Across Puerto Rico, dozens of medical device and pharmaceutical manufacturers are facing similar challenges. More than two months after Hurricane Maria, the only power for many of these companies comes from emergency generators. They’re also facing logistical problems and staffing shortages that have left some manufacturers unable to keep up with demand. Because there was a shortage of the saline bags used to inject IV drugs in patients, the FDA recently stepped in and approved imports from overseas facilities.

Another medical device company, Medtronic, has four plants in Puerto Rico. Medtronic’s Fernando Vivanco, senior director of corporate communications, says his company also lost employees and is looking to hire 300 new workers. Medtronic now provides its employees with aid and services never offered before, Vivanco says.

“We’ve gone as far as doing things like providing free meals for our employees, ensuring that they have water and food that they can take home in the evenings,” he says. Medtronic now is offering on-site daycare and even a laundromat for workers.

Maria is expected to have a $55 to $65 million impact on Medtronic’s bottom line. But Vivanco says the storm hasn’t affected the company’s commitment to staying in Puerto Rico. “We have a talented and skilled workforce there,” he says. “And we continue to see a future on the island.”

But after Hurricane Maria, manufacturers in Puerto Rico are now facing what some are calling a potential man-made disaster. It’s a provision in the tax bill that recently passed the House that would impose a 20 percent tax on goods made in Puerto Rico and shipped to the U.S. mainland. Puerto Rico’s Ricardo Rosselló and non-voting representative in Congress, Jenniffer González lobbied hard against that provision. González says she’s received assurances from Republican leaders that if the measure passes the Senate, the part affecting Puerto Rico will be fixed before final passage.

Manufacturing makes up about half of Puerto Rico’s economy. A decade ago, Congress phased out an important tax break that attracted manufacturers, especially pharmaceutical and medical device companies to the island. Since then, many companies have left. If this new provision becomes law, Julio Benitez, with Puerto Rico’s economic development agency, says he worries that many other manufacturers may follow suit.

“They will have to consider seriously their future,” Benitez says. “Because, at the end of the day, we’re talking about money.”

At C-Axis, general manager Haley says the plant is getting a new roof soon and he’s working on an insurance claim so he can replace his damaged equipment. He says he’ll do whatever he can to keep his employees working.

“This is a time of need and I have no interest in not giving it our all,” Haley says. “But it only is going to take a couple of missteps and we won’t have the ability to do that.” He is frustrated with the federal government over the slow pace of recovery.

But Haley is even more upset about the tax provision. “We’re U.S. citizens,” he says, “and our government has failed us.”

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In April this year, Katie Herzog checked into a Boston teaching hospital for what turned out to be a nine-hour-long back surgery.

The 68-year-old consulting firm president left the hospital with a prescription for Dilaudid, an opioid used to treat severe pain, and instructions to take two pills every four hours as needed. Herzog took close to the full dose for about two weeks.

Then, worried about addiction, she began asking questions. “I said, ‘How do I taper off this? I don’t want to stay on this drug forever, you know? What do I do?’ ” Herzog says, recalling conversations with her various providers.

She never got a clear answer.

When none of her providers explained to Herzog how to wean herself off the Dilaudid, she turned to Google. She eventually found a Canadian Medical Association guide to tapering opioids.

“So I started tapering from 28 [milligrams], to 24 to 16,” Herzog says, scrolling through a pocket diary with red cardinals on the cover that she used to keep track.

About a month after surgery, she had a follow-up visit with her surgeon. She had reached the end of her self-imposed tapering path the day before and at the doctor’s, she recalls feeling quite sick.

“I was teary, I had diarrhea, I was vomiting a lot, I had muscle pains, headache, I had a low-grade fever,” Herzog says.

The surgeon thought she had a virus and told her to see her internist. Her internist came to the same conclusion.

She went home and suffered through five days of what she came to realize was acute withdrawal, and two more weeks of fatigue, nausea and diarrhea.

“I had every single symptom in the book,” Herzog says. “And there was no recognition by these really professional, senior, seasoned doctors at Boston’s finest hospitals that I was going through withdrawal.”

Herzog did not name any of the providers who had something to do with her pain management or missed signs of withdrawal. She said she sees this as a system-wide problem. Herzog did share medical records that support her story. After the withdrawal, she did not crave Dilaudid and she manages any lingering pain with Tylenol. She has since returned to her providers, who’ve acknowledged that she was in withdrawal.

Not an isolated incident

Herzog’s story is one doctors are hearing more and more. “We have many clinicians prescribing opioids without any understanding of opioid withdrawal symptoms,” says Dr. Andrew Kolodny, director of Physicians for Responsible Opioid Prescribing and co-director of the Opioid Policy Research Collaborative at Brandeis University’s Heller School. One reason, Kolodny says, is that doctors don’t realize how quickly a patient can become dependent on drugs like Dilaudid.

Sometimes that dependence leads to full-blown addiction. The majority of street drug users say they switched to heroin after prescribed painkillers became too expensive.

Now, a handful of doctors and hospital administrators are asking, if an opioid addiction starts with a prescription after surgery or some other hospital-based care, should the hospital be penalized? As in: Is addiction a medical error along the lines of some hospital-acquired infections?

Writing for the blog and journal Health Affairs, three physician-executives with the Hospital Corporation of America argue for calling it just that.

“It arises during a hospitalization, is a high-cost and high-volume condition, and could reasonably have been prevented through the application of evidence-based guidelines,” write Drs. Michael Schlosser, Ravi Chari and Jonathan Perlin.

The authors admit it would be hard for hospitals to monitor all patients given an opioid prescription in the weeks and months after surgery, but they say hospitals need to try.

“Addressing long-term opioid use as a hospital-acquired condition will draw a clear line between appropriate and inappropriate use, and will empower hospitals to develop evidenced-based standards of care for managing post-operative pain adequately while also helping protect the patient from future harm,” said Schlosser in an emailed response to questions.

Kolodny said it’s an idea worth considering.

“We’re in the midst of a severe opioid epidemic, caused by the over-prescribing of opioids,” Kolodny says. “Putting hospitals on the hook for the consequences of aggressive opioid prescribing makes sense to me.”

Potential addiction vs. pain management awareness

But penalizing hospitals for patients who become addicted to opioids conflicts with payments tied to patient satisfaction surveys. Hospitals that do not adequately address patients’ pain may lose money for low patient satisfaction scores. In response to the opioid epidemic, patient surveys are shifting from questions like, “Did the hospital staff do everything they could to help you with your pain?” to questions that emphasize talking to patients about their pain. But physicians may still prescribe more, rather than fewer, opioids to avoid retribution from dissatisfied patients.

“This is a real concern that patients who may feel that their pain is under-managed may take that out in these patient report cards,” says Dr. Gabriel Brat, a trauma surgeon at Beth Israel Deaconess Medical Center who studies the use of opioids after surgery at Harvard Medical School.

Most patients leave the hospital with more pain meds than they need. Studies show that between 67 and 92 percent of patients have opioid pills left over after common surgical procedures.

One reason that may contribute to over-prescribing is that patients vary a lot. Brat said about 10 percent of patients need intense pain management, while the others, not so much, but it’s difficult to identify that 10 percent.

“Many surgeons are still prescribing opioids for the subset of patients that have higher requirements, as opposed to for the majority of patients who are taking a very small percentage of the pills that they are prescribed,” Brat explains.

There are no firm guidelines for which opioids to prescribe after surgery, at what dose or for how long. The CDC released opioid prescribing guidelines for chronic pain in 2016, but it included only brief references to acute pain.

Some opioid prescribing guidance for surgeons is emerging. A study published in September reviewed surgical records for 215,140 patients. It found that the optimal opioid prescription following general surgery is between four to nine days.

This story is part of a reporting partnership with NPR, WBUR and Kaiser Health News.

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As a lifelong racket-sports fanatic, I’ve dealt with shoulder pain for decades, treating it with bags of frozen peas, physical therapy, cortisone shots and even experimental treatments like platelet-rich plasma. Eventually, however, the soreness prevented me from handling daily-living tasks like pulling a bottle of olive oil off the top shelf of my kitchen or reaching to the back seat of my car to grab my purse. Even low-impact activities such as swimming freestyle hurt a lot. Sleeping also got tougher. After MRI showed two full-thickness rotator-cuff tears, I finally called a surgeon.

My tennis-team pals who had survived the operation gave me valuable advice: sewing Velcro down the front of half a dozen T-shirts to avoid having to put them over my head; borrowing an electric recliner chair in which to sleep for the first six weeks; buying pump bottles of shampoo and conditioner that I could dispense with my left hand; and removing safety caps from medications. To manage the pain after surgery, they also suggested renting an ice machine.

I’ve had bad side effects from anti-inflammatory painkillers and my goal was to take as few opioids as possible, so the ice machine sounded appealing. Two physical therapists recommended models with a mechanical pump that circulates chilled water. They said to be sure to use one that also provides compression, which reduces stiffness, swelling and pain in the joint.

My surgeon, Dr. David Lutton at Washington Circle Orthopaedic Associates in Washington, D.C., agreed that an ice machine was a great idea, saying via email that cool-therapy devices help manage postoperative discomfort “while minimizing the physical and cognitive side effects of pain medications such as narcotics.”

Unfortunately, my doctor’s surgical coordinator told me I’d have to pay to rent one on my own because my insurance wouldn’t cover it. The best price I could find was $250 for a three-week rental of a Game Ready machine from Orthosport, a distributor in Virginia. This price sounded high, but I was relieved that the surgery and physical therapy would be covered, and my fears about excessive post-operative pain outweighed my economic concerns. Despite the pessimistic warnings about coverage, I asked Orthosport to submit the bill to Cigna.

During the first few weeks after surgery, I tried to take opioid painkillers only sparingly, relying mostly on the ice machine. I sometimes left it on throughout the night while I tried to sleep in my sling in a borrowed recliner, and it frequently relieved the discomfort enough that I could sleep for four to five consecutive hours.

After three weeks, I decided that it was worth paying an additional $250 out of pocket to keep the machine for another three weeks. Unlike the type of physical therapy I was used to for sports injuries — the kind that immediately reduces pain — the therapy regimen after rotator-cuff surgery is absolutely excruciating for several weeks, sometimes months.

The ice machine helped me taper my drug use from oxycodone to tramadol, a less powerful painkiller, and now I’m using primarily acetaminophen. More than six weeks after surgery, I’m still relying on the Game Ready machine and dread the day when I’ll have to give it up.

A couple of weeks into my recovery period, Cigna denied my claim. I appealed by explaining that the ice machine was medically necessary because I am unable to take anti-inflammatories, and the unit was providing a safe and effective alternative to opioids, which had given me several adverse side effects when I’d used them in the past. It was also much easier to work without having to hold, strap or tape ice packs on the front, back and side of my shoulder. Cigna denied my appeal and told me that the ice machine was a “personal convenience item” and therefore a noncovered expense.

I was determined to find out why an insurer wouldn’t pay for the ice machine my doctor prescribed when it had covered the oxycodone. This drug and other painkillers have fueled the opioid epidemic, which according to the National Center for Health Statistics killed more than 64,000 people in the U.S. in 2016. I also was curious to find out why insurance companies weren’t convinced about the effectiveness of ice machines, so in between shoulder exercises and tutoring, I switched gears and went into reporter mode.

“Physician or patient anecdotes of good results are the least compelling evidence to payers,” Dana Macher, vice president of reimbursement and market access at Avalere Health, a health care consulting firm, told me in an email. “Bottom line is that it is all about the evidence. The gold standard is multiple randomized controlled clinical trials. Devices rarely have this information due to the fact that they do not (many cannot) invest the sums of money required. Lower-quality data or no published data is likely to result in non-coverage.”

Then I contacted the people at Game Ready, who cited five studies that show benefits for knee- and hip-surgery patients provided by this system compared with passive ice therapy. These benefits include reduced consumption of narcotics; improvement of measurable physical therapy milestones; reduced pain and swelling; increased postoperative function; and improved patient satisfaction with the recovery process. I sent my insurance company links to the abstracts for these studies.

Cigna replied. “Our coverage policies for medications, medical procedures and medical devices are based on an extensive examination of peer-reviewed clinical studies, journal articles and guidelines from professional medical societies,” wrote Dr. Julie Kessel, head of Cigna’s Coverage Policy Unit, via email. “Currently, the clinical evidence for the Game Ready device does not support its coverage, as its benefits over applying ice to the injured area have not yet been established. However, our coverage policies are typically reviewed annually and can be updated based on new clinical evidence.”

Tomasina Barton, senior vice president of marketing at Game Ready, says she doesn’t know whether private insurance companies have seen her company’s clinical studies or use them in relation to their coverage policies.

“Holistically, we would want an insurance company to look at the overall quality and cost of care,” she says. “Hospitals and providers are looking at where the patient does best, and patients are recovering better at home.”

Insurance coverage for home-care ice machines varies by state and individual policy, according to Barton, but private insurers typically refuse to cover them.

Despite the failure of my appeal to Cigna, several health care professionals told me that appeals are important catalysts for change in the insurance industry even if they don’t produce immediate results.

“The system does rely on people appealing to some degree,” says Dan Mendelson, president of Avalere Health. “Insurance companies will re-review the evidence where there are a lot of appeals, but devices and procedures can be considered experimental for decades, and without peer-reviewed literature, insurance companies won’t cover them.”

Although the use of cryotherapy devices is still considered experimental by many insurance companies, doctors in other specialties besides orthopedics agree that methods to manage pain without opioids should be a top priority.

“The medical community, insurance companies, and patients should all be doing everything in our power to limit our reliance on opioids,” says Dr. Marian Sherman, an anesthesiologist at George Washington University Hospital who has a special interest in opioid-sparing strategies for postoperative pain control. “This means capitalizing on all available pain-reducing modalities. Icing machines have been demonstrated to work, and when used appropriately, the side-effect profile is zero. We can’t say this about a single medication.”

Here’s my conclusion: If insurance companies want to play a part in the solution to the opioid crisis, they are going to need to start thinking outside the traditional boxes. The manufacturers of these cryotherapy devices need to provide insurance companies with more convincing peer-reviewed data of their benefits, including the devices’ role in getting patients out of rehab and back to work sooner, which will cut costs in the long run. Patients need to let their doctors and insurance companies know that they want insurance coverage for safe alternatives to narcotics — even if it means going through the time-consuming appeal process.

“The more information we can get out to the public, the more demand there will be for the ice machines,” Lutton wrote in his email to me. “Ultimately, that’s the only way that the insurance companies will end up paying for them.”

Lauren Kafka is a freelance writer, editor and English tutor and founder of Kafka Consulting in Bethesda, Md. She hopes to be back on the tennis court next summer. She’s on Twitter: @LaurenKafka

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This month diners in Toronto were treated to a four-course meal at a pop-up restaurant called June’s. The menu included Northern Thai leek and potato soup with a hint of curry, a pasta served with smoked arctic char followed by garlic rapini and flank steak. The entire meal was topped off with a boozy tiramisu for dessert.

In addition to a mouthwatering meal, the chefs at June’s also served a message which they wore on their shirts: “Break bread. Smash stigma.”

Worldwide there are more than 30 million people living with HIV/AIDs, including more than a million in the U.S. The two-day event was a fundraiser put on by Casey House, Canada’s only stand-alone hospital for HIV/AIDS treatment. Everyone in the kitchen was HIV-positive.

After running a survey in which 50 percent of Canadians said they wouldn’t eat a meal knowingly prepared by someone with HIV, the hospital decided to put on the project.

Casey House’s CEO Joanne Simons says the point of the project was to get people talking about the stigmas that still surrounds HIV/AIDS. June’s event was a success and Simons says they plan to do another run in Toronto. Simons says they’ve also had interest globally and are “starting to work on a plan to roll this out elsewhere.”

On how the experience was for the HIV-positive staff

There were 14 people who are HIV-positive. They were led by head chef Matt Basile, who is very popular in Toronto — owns a restaurant, has food trucks. And he worked with the chefs to co-create the menu. I think that they felt very empowered to be able to speak up and to be able to offer a meal that was absolutely divine.

On questions diners had about HIV/AIDS

We were receiving many questions about, “Well, can I get HIV through food? What happens if a chef cuts their finger in the kitchen?” I mean the answer is absolutely not. There is no way to contract HIV through the preparation of food and if a chef did cut themselves during the preparation of a meal we would treat it just like we would anybody whether they were HIV-positive or not. You obviously apply first aid, you sanitize the area, you throw out any food that may have had blood on it. And also the virus has a very limited lifespan outside of the body and with the heat and the light within a kitchen environment, the virus would not survive.

On how stigmas about HIV/AIDS have changed

Because the treatment and medication support over the past decade has become a lot more effective, people can live well with this disease and live into very ripe old age. But there’s still a lot of myth and education is required. Unfortunately, for our clients, who are some of the most vulnerable in the community, they experience stigma on a day-to-day basis from their friends, family, coworkers, other health care professionals, so it’s still a very real issue.

Thomas Lu produced the audio version of this story. Wynne Davis adapted it for Web.

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I recently hobbled to the drugstore to pick up painkillers after minor outpatient knee surgery, only to discover that the pharmacist hadn’t yet filled the prescription. My doctor’s order of 90 generic Percocet exceeded the number my insurer would approve, he said. I left a short time later with a bottle containing a smaller number.

When I got home and opened the package to take a pill, I discovered that there were 42 inside.

Talk about using a shotgun to kill a mosquito. I was stiff and sore after the orthopedist fished out a couple of loose pieces of bone and cartilage from my left knee. But on a pain scale of 0 to 10, I was a 4, tops. I probably could have gotten by with a much less potent drug than a painkiller like Percocet, which contains a combination of the opioid oxycodone and the pain reliever acetaminophen, the active ingredient found in over-the-counter Tylenol.

When I went in for my follow-up appointment a week after surgery, I asked my orthopedist about those 90 pills.

“If you had real surgery, like a knee replacement, you wouldn’t think it was so many,” he said. He told me the electronic prescribing system sets the default at 90. So when he types in a prescription for Percocet, that is the quantity the system orders.

Such standard orders can be overridden, but that is an extra step for a busy physician and takes time.

As public health officials grapple with how to slow the growing opioid epidemic — which claims 91 lives each day, according to federal statistics — the over-prescription of narcotics after even minor surgery is coming under new scrutiny.

While patients today are often given opioids to manage postoperative pain, a large supply of pills may open the door to opioid misuse, either by the patients themselves or others in the family or community who can access the leftovers.

Post-surgical prescriptions for 45, 60 or 90 pills are “incredibly common,” says Dr. Chad Brummett, an anesthesiologist and pain physician at the University of Michigan Medical School.

Last year, the Centers for Disease Control and Prevention released a general guideline saying that clinicians who prescribe opioids to treat acute pain should use the lowest effective dose and limit the duration to no longer than seven days.

But more detailed guidance is necessary, clinicians say.

“There really aren’t clear guidelines, especially for surgery and dentistry,” Brummett says. “It’s often based on what their chief resident taught them along the way or an event in their career that made them prescribe a certain amount.”

Or, as in my case, an automated program that makes prescribing more pills simpler than prescribing fewer.

Brummett is co-director of a Michigan program that has released recommendations for post-surgical opioid prescribing for a growing list of procedures.

To determine the extent to which surgery may lead to longer-term opioid use, Brummett and his colleagues examined the insurance claims of more than 36,000 adults who had surgery in 2013 or 2014 for which they received an opioid prescription. None of the patients had prescriptions for opioids during the prior year.

The study, published online in JAMA Surgery in June, found that three to six months after surgery, roughly 6 percent of patients were still using opioids, having filled at least one new prescription for the drug. The figures were similar whether they had major or minor surgery. By comparison, the rate of opioid use for a control group that did not have surgery was just 0.4 percent.

Some insurers and state regulators have stepped in to limit opioid prescriptions. Insurers routinely monitor doctors’ prescribing patterns and limit the quantity of pills or the dosage of opioid prescriptions.

At least two dozen states have passed laws or rules in just the past few years aimed at regulating the use of opioids.

Last year in my state of New York, Gov. Andrew Cuomo signed legislation that reduced the initial opioid prescription limit for acute pain from 30 days to no more than a seven-day supply.

As my experience demonstrated, however, a seven-day limit (those 42 pills in my case) can still result in patients receiving many more pills than they need. (For those who find themselves in a similar situation with excess pills, there is a safe and proper way to dispose of them.)

Still, some worry that all this focus on overprescribing may scare physicians away from prescribing opioids at all, even when appropriate.

“That’s my concern, that people are so afraid of things and taking it to such an extreme that patient care suffers,” says Dr. Edward Michna, an anesthesiologist and pain management physician at Brigham and Women’s Hospital in Boston. Michna is on the board of the American Pain Society, a research and education group for pain management professionals. Michna has been a paid consultant to numerous pharmaceutical companies, some of which manufacture narcotics.

But other doctors say that one of the reasons doctors call in orders for lots of pills is convenience.

“When you land on the front lines, you hear, ‘I like to write for 30 or 60 pills because that way they won’t call in the middle of the night’ ” for a refill, says Dr. Martin Makary, a professor of surgery and health policy at Johns Hopkins School of Medicine.

Makary is spearheading a consortium of Hopkins clinicians and patients that provides specific guidelines for post-surgical opioid use. The program, part of a larger effort to identify areas of overtreatment in health care, also identifies outlier prescribers nationwide to encourage them to change their prescribing habits.

The Hopkins group doesn’t have an opioid recommendation for my surgery. The closest procedure on their website is arthroscopic surgery to partially remove a torn piece of cartilage in the knee called the meniscus. The post-surgical opioid recommendation following that surgery: 12 tablets.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Follow Michelle Andrews on Twitter @mandrews110.

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On a recent weekday afternoon, Ruby Corado let herself into the drop-in center at the homeless shelter she founded for LGBTQ youth to make the rounds with new clients.

In the basement of Casa Ruby in Washington, D.C., transgender men and women in their late teens and 20s, mostly brown or black, shared snacks, watched TV, chatted or played games on their phones. Many of them, said Corado, are part of the 31 percent.

That’s 31 percent of transgender Americans who lack regular access to health care. The finding comes from a new poll by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of public health.

“I’m not surprised, because 31 percent — it’s a lot,” Corado said quietly. Her own experiences with homelessness, rape, assault have left her all too familiar with the vulnerabilities faced by many transgender people.

Corado pointed to one crucial word in the study that deserves extra emphasis. “What does regular health care mean?” she asked, then answered the question herself: “Preventable.”

Preventable problems, including HIV infection and some cancers, kill many people in this community. It’s harder for transgender people to find health care coverage, because it’s harder for them to find jobs. Social stigmas aside, consider the difficulty of getting hired if your gender does not appear to match the one on your legal ID. According to the 2015 U.S. Transgender Study, transgender people face an unemployment rate three times as high as the national average — 15 percent versus 5 percent.

Then there’s what might happen when seeking medical attention. In the NPR poll, 22 percent of transgender people said they’d avoided doctors or health care for fear of being discriminated against.

“Your trans status is on display and on parade for people to make fun of you,” Corado said, reflecting on insensitive medical professionals who have asked her such questions as, “What are you?”

“Right now, it’s very hard for a lot of people to even find a primary care provider who’s willing to work with them,” said Kellan Baker, a doctoral candidate at Johns Hopkins University who studies how health policies affect gay, lesbian, queer and transgender Americans. He said even if you regularly see a physician, a number of insurance companies will not cover care related to gender transition, such as hormones or surgery.

“Which, as you can imagine, is a huge barrier for transgender people in terms of mental health,” he said. “So you’re looking at yourself in the mirror, you’re not able to get health insurance coverage [and] you can’t get health care that you need to make sure that how you look aligns with who you are.”

Surgery on reproductive organs is expensive, so many people leave them alone. That means a trans man with a uterus — or a trans woman with a prostate — might have to endure embarrassing, awkward questions from health care providers when getting regular care, such as an annual physical.

Baker had no trouble providing examples.”What do you mean you need a cervical Pap test for a man or a prostate exam for a woman?” he asked. “How do we compute that? You shouldn’t have that part, so we don’t know what to do with you.”

Those were the kinds of questions Yee Won Chong had to face when he was diagnosed with stage 2 breast cancer. He had undergone what’s known as top surgery, where breast tissue is removed and the chest is reconstructed to a more masculine appearance. However, he later developed cancer in the remaining breast tissue. His doctor didn’t know how to code him into the medical records system.

“I’m her first transgender patient,” Chong explained. But he was lucky. His oncologist, Dr. Tammy De La Melana, committed herself and her office team to the best possible care for Chong. And in a coincidence that Chong described as freaky, his roommate, who is also transmasculine, discovered he had ovarian cancer. They’re working now on a documentary about their experiences, called Trans Dudes with Lady Cancer.

It’s worth noting that Southern Comfort, an earlier documentary about a transgender man with ovarian cancer, won the Grand Jury Prize at the Sundance Film Festival in 2001. Back then, transgender people were even more likely to slip through the cracks of the health care system, but insurance companies and many medical professionals still treat them as though their bodies don’t make any sense.

All that said, there is a place for transgender people looking for high-quality and low-cost health care to go: Planned Parenthood.

Planned Parenthood trains its staff to be sensitive to transgender people. Many of its health centers offer trans people a wide array of services, including primary care, annual exams and STD screenings. Currently, Planned Parenthood offers hormone replacement therapy at health centers in 17 states, and its national headquarters reports an 80 percent increase in centers offering hormones to transgender patients from 2013 to 2015.

At the Virginia League for Planned Parenthood in Richmond, Va., a number of services for transgender people are available.

Afton Bradley, the center’s program manager for transgender health, ran through some questions he thinks about when providing care to trans patients. “Does our front desk know how to be affirming?” he asked. “Is our electronic health record affirming? Does it ask about pronouns and gender ID in addition to whatever legal sex is on their insurance or ID?”

Bradley said this Planned Parenthood can handle trans-specific problems. What happens when a trans woman injects herself with building-grade silicone to get feminine curves? Or a trans man buys black market testosterone, or injures himself by binding his chest with duct tape?

Ryan Brazell, a trans man who gets his care here, remembered his first visit. “I went out to my car and was like, ‘I felt really weird,’ ” he said. “And it took me a few days to figure out why. It was the first time I had a health care experience I was happy with. And I didn’t know what that felt like until I had that experience at Planned Parenthood.”

That experience is wholly unfamiliar to many clients at the Casa Ruby LGBTQ shelter. “I’ve seen a lot of people die,” said its founder, Corado. “I’ve been to a lot of hospitals to recognize bodies that were dead from HIV or violence, or shot and stabbed and wounded.”

Dozens of trans people have been violently killed just this year across the country. Another tragic public health issue: Almost 20 percent of black transgender women are HIV-positive, compared with only 3 percent in the general population.

“It is very likely, if you are a transgender woman of color, that you will die from HIV,” Corado said, underscoring again the number of deaths suffered by transgender women of color that are potentially preventable. “That you will die from AIDS. That you die stabbed or killed. You’ll die from some kind of cancer, or suicide.”

The U.S. Transgender Survey found that 40 percent of transgender people have attempted suicide in their lifetimes. But that too, is potentially preventable, said Bradley at the Virginia League for Planned Parenthood.

“What we see is a dramatic reduction in those attempts when people have access to affirmative care,” he said. Affirmative care means treating trans people like people, Bradley says, adding that it’s not that hard.

Our ongoing series “You, Me and Them: Experiencing Discrimination in America” is based in part on a poll by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health. We have previously released results for African-Americans, Latinos, Native Americans and whites so far. In coming weeks, we will release results for Asian-Americans and women.

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