Health and Disability

People receiving an inert treatment believed they experienced more severe adverse side effects when the dummy drug was labeled as expensive, scientists report.

The researchers say brain regions responsible for higher-order cognition can influence primal pain sensing at the spinal level.

To study the neurological causes for the so-called nocebo effect (where people in clinical trials sometimes report negative side effects even though they received inactive substances), Alexandra Tinnermann and colleagues developed a new functional magnetic resonance imaging (fMRI) method for simultaneous activity measurements in the entire central pain system throughout the cortex, brainstem, and spinal cord.

For the nocebo treatment, the scientists enrolled 49 people in a trial for a supposed anti-itch cream that, in reality, contained no active ingredients.

All participants were told that increased pain sensitivity was a potential side effect for the inert cream, but some were informed that they were receiving an expensive ointment and others were led to believe that the lotion was cheap (the scientists even created two different packages for the balms, indicating high or low price).

The debate about if and how to amend, repeal, or replace the Affordable Care Act has drawn attention to the central role that the Medicaid program plays in providing coverage and access to health care for millions of Americans. This central role positions Medicaid as an ideal platform on which to build an integrated system that simultaneously addresses health care and social needs.

Evidence has been building that social determinants of health have a bigger impact even than health care services on people’s health, functioning, and quality of life. But the United States, while arguably developing some of the world’s most powerful health care technologies, has been slower to systematically address social determinants of health. We spend more than any other country on health care, per capita, but achieve worse health outcomes, Betsy Bradley and Lauren Taylor document in their book The American Health Care Paradox. But when health care and social spending are examined together, the United States ranks 13 in total spending.

“Ignoring the economic and social circumstances that result in poor health makes treating the resulting health problems much more expensive,” one review of that book summarized. Bradley and Taylor have gone on to argue that a shift towards social services could improve health outcomes and reduce costs for the system overall.

While certainly useful to those persons with the condition, this is also a proof of concept for disorders that have straightforward mutations as their underlying cause...

https://goo.gl/KYHn7u

For the first time, doctors have used gene therapy to stave off a fatal degenerative brain disease, an achievement that some experts had thought impossible.

The key to making the therapy work? One of medicine’s greatest villains: HIV.

The patients were children who had inherited a mutated gene causing a rare disorder, adrenoleukodystrophy, or ALD. Nerve cells in the brain die, and in a few short years, children lose the ability to walk or talk.

They become unable to eat without a feeding tube, to see, hear or think. They usually die within five years of diagnosis.

The disease strikes about one in 20,000 boys; symptoms first occur at an average age of 7. The only treatment is a bone-marrow transplant — if a compatible donor can be found — or a transplant with cord blood, if it was saved at birth.

But such transplants are an onerous and dangerous therapy, with a mortality rate as high as 20 percent. Some who survive are left with lifelong disabilities.

Dr. Salzman, with assistance from her sister, Rachel, and from other scientists, was undeterred. She corralled researchers worldwide, asking why a different sort of virus couldn’t be used to slip a good ALD gene into the boys’ cells.

The best choice, it turned out, was a disabled form of HIV, which can insert genes into human cells more safely than other viral carriers.

Late last Tuesday night, only hours after Republican leaders announced they were pulling the Graham-Cassidy repeal and replace bill from Senate consideration, the body unanimously passed the Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act of 2017 (the Act).

Aiming to improve care for seniors with chronic conditions, the Act first passed the Senate Finance Committee in May of this year. A Health Affairs blog post by former Senators Tom Daschle and Bill Frist, along with in-depth analysis from the Bipartisan Policy Committee, helpfully outline the need for a bipartisan effort to address these issues.

Osteoarthritis is the form of joint disease that’s often called “wear-and-tear” or “age-related,” although it’s more complicated than that. While it tends to affect older adults, it is not a matter of “wearing out” your joints the way tires on your car wear out over time. Your genes, your weight, and other factors contribute to the development of osteoarthritis. Since genes don’t change quickly across populations, the rise in prevalence of osteoarthritis in recent generations suggests an environmental factor, such as activity, diet, or weight.

The findings were intriguing:

• The prehistoric skeletons and early 1900s cadavers had similar rates of knee osteoarthritis: 6% for the former and 8% for the latter.
• With a prevalence of 16%, the more recent skeletons had at least double the rate of knee osteoarthritis as those living in centuries past.
• Even after accounting for age, BMI, and other relevant information, those in the post-industrial group had more than twice the rate of knee osteoarthritis as those in the early industrial group.

The U.S. Food and Drug Administration today launched a new user-friendly search tool that improves access to data on adverse events associated with drug and biologic products through the FDA’s Adverse Event Reporting System (FAERS). The tool is designed to make it easier for consumers, providers, and researchers to access this information.

“We found that, throughout the health care system and in society at large, there is:

•a lack of recognition of the seriousness and severity of these conditions
•a profound shortage of knowledgeable care providers
•a dearth of clinical tools to support and guide care
•a discouraging shortage of services and supports for people living with these conditions
•an absence of support for family caregivers.

The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS.

…

For those living with ME/CFS, FM and ES/MCS, the lack of recognition of these serious and debilitating conditions is as harmful as the lack of treatments. …

We urge the Minister to act now to raise awareness of these conditions and address the barriers that keep people with ME/CFS, FM and ES/MCS from getting the care and services they need.”

…

From the press release:

IMPROVING CARE FOR PEOPLE LIVING WITH ENVIRONMENTAL HEALTH CONDITIONS

Release of Interim Report Looks at Hard-to-Diagnose Conditions

September 29, 2017

Ontario is releasing a report that recommends improving the understanding and recognition of environmental health conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia and environmental sensitivities/multiple chemical sensitivity.

The interim report, Time for Leadership: Recognizing and Improving Care, was produced by the Task Force on Environmental Health.

Its recommendations focus on three key areas:

research, education and care to improve supports for people in Ontario living with environmental health conditions.

The province is currently reviewing the task force’s recommendations and is renewing the funding for a fellowship in Clinical Environmental Health at the University of Toronto to expand clinical expertise in this domain.

Ifyou scroll through databases of children and families who are part of the rare disease community, vague words like “unknown” and “undiagnosed” appear over and over again.

Alexander: Mitochondrial disease

Bertrand: Unknown lysosomal disease

Bethany: Undiagnosed

Connor: Rare chromosomal disorder

Eithene: Unknown genetic disorder

Some disorders are too rare for most physicians to have heard of them; others are completely new mutations.

Ambreen Sayed, a PhD student at the University of Maine’s Graduate School of Biomedical Science and Engineering who researches rare neuromuscular diseases, recalls her time interning in a hospital’s genetics department: “Nobody knew the name or proper treatment for a disorder affecting a particular child that was brought in, so the child couldn’t be effectively diagnosed or treated. I had always thought science treats everyone equally,” she says.

“That was one of the first instances where I was exposed to the fact that not every problem has a proper scientific name or definition, let alone people who want to work on the issue. That’s when I decided I wanted to work in the field of rare diseases,” says Sayed.

lthough each rare disease affects fewer than one in 1,000 individuals, they collectively affect one in every 10 Americans, according to the National Institutes of Health. A select few — such as cystic fibrosis, ALS, and Huntington’s disease — have gained attention and research funding through mass awareness efforts and celebrity involvement, but most of the 7,000 known rare diseases remain completely unfamiliar to the general population and much of the medical community.

Fixing chronic back pain is possible only when patients understand how much it is produced by the brain, not the spine

https://goo.gl/26MKnc

or patient after patient seeking to cure chronic back pain, the experience is years of frustration. Whether they strive to treat their aching muscles, bones and ligaments through physical therapy, massage or rounds of surgery, relief is often elusive – if the pain has not been made even worse. Now a new working hypothesis explains why: persistent back pain with no obvious mechanical source does not always result from tissue damage. Instead, that pain is generated by the central nervous system (CNS) and lives within the brain itself.

I caught my first whiff of this news about eight years ago, when I was starting the research for a book about the back-pain industry. My interest was both personal and professional: I’d been dealing with a cranky lower back and hip for a couple of decades, and things were only getting worse. Over the years, I had tried most of what is called ‘conservative treatment’ such as physical therapy and injections. To date, it had been a deeply unsatisfying journey.

Like most people, I was convinced that the problem was structural: something had gone wrong with my skeleton, and a surgeon could make it right. When a neuroscientist I was interviewing riffed on the classic lyric from My Fair Lady, intoning: ‘The reign of pain is mostly in the brain,’ I was not amused. I assumed that he meant that my pain was, somehow, not real. It was real, I assured him, pointing to the precise location, which was a full yard south of my cranium.

Like practically everyone I knew with back pain, I wanted to have a spinal MRI, the imaging test that employs a 10-ft-wide donut-shaped magnet and radio waves to look at bones and soft tissues inside the body. When the radiologist’s note identified ‘degenerative disc disease’, a couple of herniated discs, and several bone spurs, I got the idea that my spine was on the verge of disintegrating, and needed the immediate attention of a spine surgeon, whom I hoped could shore up what was left of it.

Months would pass before I understood that multiple studies, dating back to the early 1990s, evaluating the usefulness of spinal imaging, had shown that people who did not have even a hint of lower-back pain exhibited the same nasty artefacts as those who were incapacitated. Imaging could help rule out certain conditions, including spinal tumours, infection, fractures and a condition called cauda equina syndrome, in which case the patient loses control of the bowel or bladder, but those diagnoses were very rare. In general, the correlation between symptoms and imaging was poor, and yet tens of thousands of spinal MRIs were ordered every year in the United States, the United Kingdom and Australia.

Very often, the next stop was surgery.  For certain conditions, such as a recently herniated disc that is pressing on a spinal nerve root, resulting in leg pain or numbness coupled with progressive weakness, or foot drop, a nerve decompression can relieve the pain. The problem is that all surgeries carry risks, and substantial time and effort is required for rehabilitation. After a year, studies show, the outcomes of patients who opt for surgery and those who don’t are approximately the same. 

“Changes in diet, especially for the mother during pregnancy, may be a crucial factor,” agreed Walter Rocca at the Mayo Clinic in Rochester, Minnesota. In addition, Rocca pointed out that people born in 1929 or after would have been teenagers or younger at the end of World War II, and thus their developing brains may have particularly reaped the benefits of the societal and medical changes that occurred at that time (see full comment below).