tag:ltcreform.posthaven.com,2013:/posts Health and Disability 2017-10-21T11:29:34Z Norm DeLisle tag:ltcreform.posthaven.com,2013:Post/1199868 2017-10-21T11:29:34Z 2017-10-21T11:29:34Z Patients with Rheumatic Diseases Bail on Biosimilars https://goo.gl/ct1jwo

Almost one-quarter (24%) of patients with rheumatoid arthritis, psoriatic arthritis, or ankylosing spondylitis who switched from infliximab (Remicade) to its biosimilar CT-P13 discontinued the biosimilar by 6 months, primarily for subjective reasons, Dutch researchers found.

"The discontinuation rate of 24% in the transition group is much higher than expected," the authors commented.

"In our view, the reason for the substantial discontinuation rate in open-label studies is the awareness of both patients and physicians of the transition to the biosimilar," they wrote.

In recent surveys, some patients expressed concerns about the safety and efficacy of biosimilars, suggesting that the lower cost might mean decreased efficacy.

"Pretreatment expectancy" is a recognized influence in treatment outcomes. "Patients' own negative expectations may induce negative symptoms (hyperalgesia or adverse events) during treatment, the so-called nocebo response," the researchers observed. In addition, adverse events that occur following the transition could be incorrectly attributed by patients to the treatment even if they are independent of the medication.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1199652 2017-10-20T10:49:09Z 2017-10-20T10:49:09Z Mainstream telehealth needs vendors to address pain points https://goo.gl/mA8Ria

Many of us are impatient for a future where telehealth reduces our visits to health professionals. Whether you are geographically isolated, tired of waiting hours in a waiting room for an overdue appointment or simply have felt the pain of dragging yourself from your sick bed to a doctor’s surgery to acquire a sick note for an employer, consumers are keen to see a change. Current health providers are expanding their services to include remote health. Health tech startups such as mediconecta and couch are creating new stand-alone services for remote care.

However substantial barriers exist for telehealth in practice according to a new survey of the 114 chief information officers, IT directors, telehealth managers and other professionals by the College of Healthcare Information Management Executives and KLAS.

About 59% of respondents listed reimbursement as a limitation, noting that some payers have been slow to reimburse telehealth visits1 and or reimburse at rates lower than face-to-face care. Most said integration between their electronic medical record and virtual care platform vendor was nonexistent or unidirectional. They also cited improved patient access as a major benefit, and three-quarters reported that they were actively planning to either expand the number of specialties served or expand patient access to providers using their present solution.  

According to Adam Gale, president of KLAS: “Telehealth holds enormous promise. However, the underlying technology needs to evolve faster. In particular, integration of telehealth with provider EMRs is still at a primitive level. Vendors need to step up in terms of technology and improved support.” 

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1198847 2017-10-17T10:26:35Z 2017-10-17T10:26:35Z Dietary Supplement Dampens Brain Hyperexcitability Seen in Epilepsy

Another interesting pharmacological crossover. Lots of people take glucosamine.....


Seizure disorders — including epilepsy — are associated with pathological hyperexcitability in brain neurons. Unfortunately, there are limited available treatments that can prevent this hyperexcitability. However, University of Alabama at Birmingham researchers have found that inducing a biochemical alteration in brain proteins via the dietary supplement glucosamine was able to rapidly dampen that pathological hyperexcitability in rat and mouse models.

These results represent a potentially novel therapeutic target for the treatment of seizure disorders, and they show the need to better understand the physiology underlying these neural and brain circuit changes.

Proteins are the workhorses of living cells, and their activities are tightly and rapidly regulated in responses to changing conditions. Adding or removing a phosphoryl group to proteins is a well-known regulator for many proteins, and it is estimated that human proteins may have as many as 230,000 sites for phosphorylation.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1198561 2017-10-16T10:00:54Z 2017-10-16T10:00:54Z An Alzheimer's Drug Has Been Found to Help Teeth Repair Themselves in Just 6 Weeks

Odd drug crossover effect of the week.......


Dental fillings may soon be left in the ash heap of history, thanks to a recent discovery about a drug called Tideglusib.

Developed for and trialled to treat Alzheimer's disease, the drug also happens to promote the natural tooth regrowth mechanism in mice, allowing the tooth to repair cavities.

Tideglusib works by stimulating stem cells in the pulp of teeth, the source of new dentine. Dentine is the mineralised substance beneath tooth enamel that gets eaten away by tooth decay.

Teeth can naturally regenerate dentine without assistance, but only under certain circumstances. The pulp must be exposed through infection (such as decay) or trauma to prompt the manufacture of dentine.

But even then, the tooth can only regrow a very thin layer naturally - not enough to repair cavities caused by decay, which are generally deep. Tideglusib changes this outcome because it turns off the GSK-3 enzyme, which stops dentine from forming.

In the research, the team inserted small, biodegradable sponges made of collagen soaked in Tideglusib into cavities. The sponges triggered dentine growth and within six weeks, the damage was repaired.

The collagen structure of the sponges melted away, leaving only the intact tooth.

Thus far, the procedure has only been used in mouse teeth.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1198021 2017-10-13T10:23:05Z 2017-10-13T10:23:05Z Allergy Drug Improves Function in Patients with Chronic Injury from Multiple Sclerosis https://goo.gl/qbi1FA

In light of previous laboratory studies of the antihistamine compound at UCSF, the researchers said, the drug most likely exerted its effect by repairing damage MS had inflicted on myelin, an insulating membrane that speeds transmission of electrical signals in the nervous system.

The drug tested in the trial, clemastine fumarate, was first identified as a candidate treatment for MS in 2013 by UCSF’s Jonah R. Chan, PhD, Debbie and Andy Rachleff Distinguished Professor of Neurology, vice chief of the Division of Neuroinflammation and Glial Biology, and senior author of the new study. First approved by the U.S. Food and Drug Administration (FDA) in 1977 for allergies, the drug has been available over the counter in generic form since 1993.

The researchers said that the Phase II results, published online on Oct. 10, 2017, in The Lancet, are the first in which a drug has been shown to reliably restore any brain function damaged by a neurological disease in human patients.

“To the best of our knowledge this is the first time a therapy has been able to reverse deficits caused by MS. It’s not a cure, but it’s a first step towards restoring brain function to the millions who are affected by this chronic, debilitating disease,” said the trial’s principal investigator, Ari Green, MD, also Debbie and Andy Rachleff Distinguished Professor of Neurology, chief of the Division of Neuroinflammation and Glial Biology, and medical director of the UCSF Multiple Sclerosis and Neuroinflammation Center.

Chan and Green are co-directors of the UCSF Small-Molecule Program for Remyelination, and both are members of the UCSF Weill Institute for Neurosciences.

The new results are particularly notable, Chan said, because patients in the trial had suffered from MS symptoms caused by injury to myelin for years. “People thought we were absolutely crazy to launch this trial, because they thought that only in newly diagnosed cases could a drug like this be effective – intuitively, if myelin damage is new, the chance of repair is strong. In the patients in our trial the disease had gone on for years, but we still saw strong evidence of repair.”

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1198020 2017-10-13T10:20:31Z 2017-10-13T10:20:31Z Scientists reverse advanced heart failure in an animal model

This is an exciting possibility. Heart failure is debilitating and lacks effective restorative treatments.....


This is a video

Researchers have discovered a previously unrecognized healing capacity of the heart. In a mouse model, they were able to reverse severe heart failure by silencing the activity of Hippo, a signaling pathway that can prevent the regeneration of heart muscle. Read more: https://surg.ws/2xB9J9J 

Original Article: http://www.nature.com/nature/journal/...

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1197537 2017-10-11T10:08:28Z 2017-10-11T10:08:28Z On UTI Front, Chicken Dinner is No Winner

This is a little bizarre......


For years, researchers have been trying to confirm an apparent link between the Escherichia coli in poultry and urinary tract infections (UTIs) in humans. Now, there's another hint of a connection between contamination back on the farm and nasty germs in our bladders.

Researchers who examined meat from retail stores in California and urine from patients with UTIs found that nearly 25% of chicken and turkey samples shared the same genotypes that were found in the urine samples, according to Reina Yamaji, MD, PhD, of the University of California at Berkeley.

Analysis showed 72 E coli genotypes that were unique to retail meat, 49 genotypes unique to human UTIs, and 12 shared genotypes, Yamaji reported at the annual IDWeek meeting, sponsored jointly by the Infectious Diseases Society of America (IDSA), the Pediatric Infectious Diseases Society (PIDS), the Society for Healthcare Epidemiology of America (SHEA), and the HIV Medicine Association (HIVMA).

Of the six most common E coli genotypes in humans, three of them were found in both retail meat and humans, she said.

The findings don't solve the mystery of whether the meats we eat -- especially poultry -- are directly related to human UTIs, an outside expert told MedPage Today.

"Evidence is growing, but a direct link has not been made yet," according to Amee Manges, PhD, of the University of British Columbia School of Population and Public Health in Vancouver. Still, she said, "these results add to the existing body of research."

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1197535 2017-10-11T10:03:24Z 2017-10-11T10:03:24Z Study Questions Durability of MMR Vaccine https://goo.gl/11i7L8

The effectiveness of the mumps vaccine wanes at an average of 27 years after the last dose, potentially explaining the resurgence of cases over the past 11 years, researchers said here.

According to an analysis of epidemiological studies, the introduction of the measles-mumps-rubella (MMR) vaccine in the 1960s lowered case rates by more than 99%, according to the CDC, and annual cases in recent years have typically numbered in the hundreds, reported Joseph Lewnard, PhD, and Yonathan H. Grad, MD, PhD, both of the Harvard TH Chan School of Public Health in Boston.

But mumps cases spiked in 2006 and again in 2016 and 2017, they said in a presentation at the annual IDWeek meeting, sponsored jointly by the Infectious Diseases Society of America (IDSA), the Pediatric Infectious Diseases Society (PIDS), the Society for Healthcare Epidemiology of America (SHEA), and the HIV Medicine Association (HIVMA).

The findings point to the need for booster doses in adults, according to Lewnard. "If you want to put mumps on the track to elimination, it's not an unreasonable expectation," he stated.

"We've largely eliminated it, but the [MMR] vaccine is not a perfect dose," said Paul Offit, MD, of the Children's Hospital of Philadelphia, to MedPage Today.

The CDC received reports of more than 6,300 cases in 2016 compared with just 229 in 2012.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1197242 2017-10-10T10:08:01Z 2017-10-10T10:08:01Z Healthcare-Associated Infection Rates Wane Over Time
But notes which infections have declined and which haven't....

Hospitals appear to be doing better at preventing healthcare-associated infections (HAIs), a researcher said here.

A 2015 update of a 2011 point-prevalence survey showed a significant drop in HAIs over time, suggesting that national efforts to prevent the infections are having an effect, according to Shelley Magill, MD, PhD, of the CDC's Emerging Infections Program (EIP) in Atlanta.

The decline was driven by sharp drops in skin and soft tissue infections and urinary tract infections (UTI), Magill said at the annual IDWeek meeting, sponsored jointly by the Infectious Diseases Society of America (IDSA), the Pediatric Infectious Diseases Society (PIDS), the Society for Healthcare Epidemiology of America (SHEA), and the HIV Medicine Association (HIVMA).

But some important conditions, notably pneumonia and Clostridium difficile infection, did not change significantly, suggesting there's more work to be done, Magill said.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1197238 2017-10-10T10:03:39Z 2017-10-10T10:03:39Z You Don’t Need to Do a Prolonged Fast Before Surgery https://goo.gl/p4MVXB 

By the 1960s the term nil by mouth (or its Latin variant NPO, nil per os) after midnight had become the widely accepted guideline for all surgical patients. If you recently had an elective procedure, you might know that it has not changed much since—fasting before surgery, meaning no food and no water, is still advice routinely given to preoperative patients. Yet the evidence—and medical practice, and even the recommendations—have evolved since Mendelson. Medical practice has yet to catch up.

For one thing, anesthesiologists no longer use ether, a substance known to make patients nauseated. They also employ endotracheal tubes, which protect the airways from the aspiration of stomach contents. Knowledge about digestion has increased to the point where the rate of calories leaving the stomach is predictable: A spate of studies on gastric emptying found that patients who consume clear fluids two hours prior to an operation do not have higher gastric volumes than those who fast for longer. In 1999, the tide of mounting evidence pushed the American Society of Anesthesiologists to amend its preoperative fasting guidelines: Patients are now instructed to have a light meal six hours before a procedure and clear fluids—drinks that you can see through, such as pulp-free juices, black coffee, or tea without milk and cream—until two hours prior to the operation. Guidelines in other countries were similarly amended.

Nevertheless, most patients appear to still be getting outdated advice and arrive to surgery thirsty and irritable. A presentation at the 2016 Anesthesiology Annual Meeting found that only 25 percent of hospitals in Michigan adhered to the new guidelines. A 2016 study of oral and maxillofacial surgeons found that 99.1 percent of them did not adopt ASA guidelines, and a worrying analysis of pediatric practices discovered that most children were fasting longer than necessary before their medical procedures, leading to negative experiences. Prolonged fasting can be associated with dehydration, hypoglycemia, and electrolyte imbalance. Some patients experience headaches and nausea before surgery.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1197015 2017-10-09T09:58:44Z 2017-10-09T09:58:44Z Study: C. Diff Cases Tied to Antibiotics for Dental Work https://goo.gl/2pUQ5k

The rise in community-acquired Clostridium difficile appeared to be at least partly fueled by a surprising source -- dentists, according to researchers here.

Analysis of 7 years of surveillance data in five Minnesota counties found that 57% of C. difficile patients had been prescribed antibiotics, something that was assumed to be the cause of the disease, according to Stacy Holzbauer, DVM, a CDC field officer assigned to the Minnesota Department of Health in St. Paul.

But 15% of those patients were given the drugs by their dentists. In many cases that fact didn't find its way into the patient's primary care records, Holzbauer told reporters at the annual IDWeekmeeting, sponsored jointly by the Infectious Diseases Society of America (IDSA), the Pediatric Infectious Diseases Society (PIDS), the Society for Healthcare Epidemiology of America (SHEA), and the HIV Medicine Association (HIVMA).

Dentists are allowed to write prescriptions for antibiotics, and often do when they are performing oral surgery or simply for prophylaxis in some patients, Holzbauer said. Indeed, one estimate suggests they write 10% of all such prescriptions, although the guidelines of the American Dental Association say that relatively few patients need such treatment.

Holzbauer said that at least part of the problem is that dentists, unlike primary care physicians, don't necessarily see the adverse effects of antibiotics, even though they might be aware of the risk in principle.

"No one goes to the dentist when they have diarrhea so [dentists] don't get the feedback," she said.

It's also not clear that dentists are routinely included in discussions about the risks of antibiotics, she said, adding they might be in a "blind spot in the antibiotic stewardship conversation."

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1197014 2017-10-09T09:57:10Z 2017-10-09T09:57:10Z HomeFeatured The High Price of the Nocebo Effect https://goo.gl/LVZEyH

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).

People treated with the “expensive” cream reported greater sensitivity on a heat-tolerance test, and the nocebo effects became more pronounced over time.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1197013 2017-10-09T09:55:41Z 2017-10-09T09:55:41Z Why Medicaid Is The Platform Best Suited For Addressing Both Health Care And Social Needs https://goo.gl/RxAQBm

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.

The Medicaid program provides a plausible platform upon which to build a health infrastructure that incorporates the social determinants of health. Medicaid could provide a common entry point that links individuals and families not just to health care services, but also to social services that affect their health. Indeed, state Medicaid leaders have long embraced this concept and are experienced in building bridges that link health and social programs to meet the comprehensive needs of their citizens.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1196771 2017-10-08T14:26:50Z 2017-10-08T14:26:50Z In a First, Gene Therapy Halts a Fatal Brain Disease

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...


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.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1196431 2017-10-06T12:34:11Z 2017-10-06T12:34:11Z The CHRONIC Care Act Passes Senate, Obstacles Remain
Some good news....

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.

This post will outline the key components of the legislation, assesses its outlook in the House, and considers what its progress may tell us about the prospect for more bipartisan action on health care in the future. The Act includes offsets and has been scored by the Congressional Budget Office (CBO) as being budget neutral, so its sponsors have “checked the boxes” they need to move forward when the political will materializes.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1195944 2017-10-04T13:30:30Z 2017-10-04T13:30:30Z The mysterious rise in knee osteoarthritis https://www.health.harvard.edu/blog/the-mysterious-rise-in-knee-osteoarthritis-2017100212504

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.

Osteoarthritis of the knee will affect at least half of people in their lifetime, and is the main reason more than 700,000 people need knee replacements each year in the US.

To explain the rise in the prevalence of osteoarthritis in recent decades, most experts proposed that it was due to people living longer and the “epidemic of obesity,” since excess weight is a known risk factor for osteoarthritis. Studies have shown not only that the risk of joint disease rises with weight, but also that even modest weight loss can lessen joint symptoms and in some cases allow a person to avoid surgery.

But a remarkable new study suggests there is more to the story.

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.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1195625 2017-10-03T13:21:51Z 2017-10-03T13:21:51Z FDA improves access to reports of adverse drug reactions https://goo.gl/874eQs

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.

"Tools like the FDA Adverse Event Reporting System are critical to the FDA’s ability to help ensure the greatest level of transparency and help patients and providers make safe use of drug and biologic products after they are approved by the FDA," said FDA Commissioner Scott Gottlieb, M.D. "The FDA is committed to fully informing patients and providers of adverse events reported with medical products and this enhanced portal now provides patients, doctors and others with easier access to the data they are interested in."

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1195624 2017-10-03T13:18:30Z 2017-10-03T13:18:30Z Province of Ontario Interim Report on ME/CFS, FM, and MCS/ES https://goo.gl/4kcNtS

“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:


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.

The province also plans to provide support for a group of experts to develop consensus on clinical case definitions, to help health care providers and their caregivers better diagnose and understand these conditions.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1194243 2017-09-27T10:26:58Z 2017-09-27T10:26:58Z The Struggle of Rare and Orphan Diseases https://goo.gl/fchx1U

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.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1193969 2017-09-26T10:10:29Z 2017-09-26T10:10:29Z Where pain lives

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


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. 

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1193005 2017-09-22T10:22:00Z 2017-09-22T10:22:00Z More Evidence that Dementia Case Numbers Are Falling https://goo.gl/z7QjFT

Numerous studies have reported a dip in dementia incidence in the developed world. When did this trend begin? In the September 5 JAMA Neurology, researchers led by Carol Derby at Albert Einstein College of Medicine in New York help address this. The researchers analyzed birth cohort data from the Einstein Aging Study, which enrolls cognitively healthy older adults living in the Bronx. Surprisingly, people born after 1928 were 85 percent less likely to develop dementia than those born before that year. The reason for such a stark drop in incidence is unclear. Neither better education nor improved cardiovascular health accounted for the effect.

A growing number of studies have reported a drop in dementia incidence in the U.S. and Europe over the last two or three decades (e.g., Feb 2016 newsApr 2016 newsNov 2016 news). Researchers have speculated that this may be due to better public health, particularly cardiovascular health (May 2013 newsJul 2014 conference news). The finding is not uniform, however, with a handful of studies reporting higher dementia incidence that may be due to greater recognition of the disease or a larger number of people reaching old age (Mar 2017 newsMay 2017 newsAbdulrahman 2014). 

“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).

While previous epidemiological studies did not specifically examine birth years, those older findings are roughly congruent with the Einstein Aging Study data, reporting the greatest drop in dementia cases after 1990, the authors noted. People born after 1929 would have entered their 60s in that decade. Most cases of late-onset dementia occur after age 60. The Rotterdam Study found a 25 percent decrease in dementia incidence in the 1990s, while the Framingham Heart Study recently reported that incidence dropped starting in the late 1980s and continued to decline into the 2010s (Schrijvers et al., 2012Satizabal et al., 2016). 

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1192245 2017-09-19T10:50:26Z 2017-09-19T10:50:26Z Controlling blood pressure with fewer side effects

Interesting approach. Undermines the standard approach of pharmacy companies to view each drug as a separate profit center....


Approximately one in three Americans has high blood pressure, but only about half of those who do have the condition under control. One common reason: they stop taking their medications, often because of troublesome side effects such as weakness, fatigue, or a dry cough. However, taking smaller doses of several different blood pressure drugs may be a good way to address these issues, a new analysis suggests.

Researchers found that taking a quarter-dose of a two-drug combination was just as effective at lowering blood pressure as taking a full dose of one drug. Taking a quarter-dose of a four-drug combination was even more effective (although it's important to note that this finding came from a single, small trial). People who took smaller doses of multiple drugs had fewer side effects than those taking a single drug at the full dose. In fact, their side effects were similar to those of people who took placebos. The study was published in the July 2017 issue of Hypertension.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1191956 2017-09-18T09:56:13Z 2017-09-18T09:56:13Z Disabled Iowans could be exempted from private Medicaid management https://goo.gl/xR7DXk

Iowa might resume direct oversight of care for people with serious disabilities instead of having private Medicaid-management companies continue doing it, the state’s human-services director said Wednesday.

Many of the most serious complaints about Iowa’s privatized Medicaid system have come from disabled Iowans and their families. Numerous families have reported having their services cut and their hassles multiplied by the management companies. Their plight has sparked a federal lawsuit against the state.

“We are examining patients that may not be the right mix” for managed care-companies to oversee, Department of Human Services Director Jerry Foxhoven told an advisory council for his agency Wednesday.

Foxhoven, who recently became the department’s director, said the Medicaid management companies could succeed at saving money by helping many other Iowans improve their health, such as by encouraging them to quit smoking. “But somebody who’s a quadriplegic and is on a ventilator, there’s probably not much you’re going to do to improve their health or bring costs down,” Foxhoven told the Council on Human Services.

Iowa shifted last year to having three private companies manage its Medicaid program, which covers health care for nearly 600,000 poor or disabled Iowans. The change has been intensely controversial, especially in regards to how it has affected care for Iowans with serious disabilities.

Foxhoven raised the possibility of exempting some recipients from managed care during a discussion Wednesday of extended negotiations over new payment rates for the for-profit management companies. Those new rates were supposed to take effect July 1. The management companies have been demanding more money, saying they’ve lost hundreds of millions of dollars on the project.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1191775 2017-09-17T10:50:52Z 2017-09-17T10:50:52Z Senate Finance Committee Leaders Agree to Five-Year CHIP Extension https://goo.gl/dWF6hC

With funding for the Children’s Health Insurance Program (CHIP) nearing its expiration at the end of September, Senate Finance Committee leaders have announced a bipartisan proposal to reauthorize funding for the program for five years. Formal legislation has not yet been released, but Chairman Orrin Hatch (R-UT) and Ranking Member Ron Wyden (D-OR) have committed to help move the proposal through Congress this month. An identical proposal must also pass the House and be signed by President Trump. 


A program with bipartisan support, CHIP currently provides affordable, comprehensive health coverage to roughly 9 million children and pregnant women who do not qualify for Medicaid, but whose families cannot afford other forms of health insurance. Since CHIP’s inception in 1997, the uninsured rate of children from ages 0 to 17 dropped from 13.9 percent that year to 4.5 percent in 2015. CHIP is currently funded in part by states, who receive federal funds at specific matching rates, much like Medicaid. 

Under the Affordable Care Act (ACA), the federal match rate for CHIP was increased by 23 percent to help incentivize states to expand their coverage programs for children. The current federal match for CHIP is set to expire after September 30, which would leave states with limited funds to continue administering the program if no deal is reached. 

Senate Finance Committee Chairman Orrin Hatch (R-UT) and Ranking Member Ron Wyden (D-OR) announced their proposal on Wednesday in hopes to ensure stability for states by extending federal funding for CHIP for five years. To reach a bipartisan agreement, the current proposal would reduce the increased 23 percent match rate over the life of the extension, dropping to 11.5 percent in 2020, and eliminating the increase by 2022.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1191384 2017-09-15T11:07:11Z 2017-09-15T11:07:11Z “I Can Take Care of Myself!”: Patients’ Refusals of Home Health Care Services https://goo.gl/JUJZrC

When patients who have been discharged from inpatient care refuse home health care services, they may experience higher rates of readmission to the hospital and a lower quality of life. This issue is not well studied or understood, and in December 2016 UHF’s Families and Health Care Project and the Alliance for Home Health Quality and Innovation sponsored a roundtable examining it. This report summarizes the discussion and findings of that roundtable.

The report also contains a number of recommendations, among them interventions that improve communication about care challenges and home health care services, qualitative and quantitative research on all aspects of home health care refusals, policy changes to increase access and coordination, and continuity across providers and care settings.

Read the press release.

Published: 05.15.2017 


Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1191144 2017-09-14T09:24:33Z 2017-09-14T09:24:33Z Pain medicine: Volume 18, Issue 9 September 2017 https://goo.gl/86SG2Y

Some very technical, and some accessible articles.....

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1190918 2017-09-13T10:24:19Z 2017-09-13T10:24:20Z Potential New Therapy Relieves Chronic Itch https://goo.gl/e3uUdo

FDA-approved arthritis drug may work in new ways to fight itch.

The roots of chronic itching have long remained a mystery. Meanwhile, those with the condition suffer from an unrelenting and sometimes debilitating urge to scratch. Now, new research at Washington University School of Medicine in St. Louis has identified immune signaling molecules that are essential for activating neurons in the skin to cause chronic itching.

In a small study, the researchers also discovered that people with a type of itch from an unknown cause, a condition called chronic idiopathic pruritus, improve when given tofacitinib (Xeljanz), a drug approved for rheumatoid arthritis. Earlier attempts to treat their itching with other anti-inflammatory drugs had not been successful, but within one month of taking tofacitinib, all five patients in the study experienced marked relief from severe itching.

The findings are published Sept. 8 in the journal Cell.

“These patients often itch day and night, and for some of them, the urge to scratch never goes away,” said senior investigator Brian S. Kim, MD, an assistant professor of medicine and co-director of Washington University’s Center for the Study of Itch. “Although this was a small study, the patients taking tofacitinib experienced dramatic improvements in terms of their itch, allowing them to sleep, stop scratching and return to living more productive lives. Obviously, we’ll need to do a larger study, but the early results are very encouraging.”

The findings also explain why an earlier study found that itching dissipates dramatically in eczema patients treated with the new drug dupilumab (Dupixent). Eczema patients have itchy, scaly rashes. The Washington University researchers found that drugs such as tofacitinib and dupilumab work so well, where many other drugs have failed, because they act directly on the nerves rather than only on the immune system.

Chronic itch affects up to 15 percent of the population and is most often caused by inflammatory conditions such as eczema and psoriasis but also is associated with kidney failure, liver disease and certain cancers and nerve disorders. However, cases of chronic itching for which there are no known causes are particularly puzzling and among the most difficult to treat.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1190631 2017-09-12T10:29:46Z 2017-09-12T10:29:46Z The PAINS Project https://goo.gl/hbUXAf

Better chronic pain treatment will improve the lives of millions of Americans, save billions of dollars, and reduce opioid prescribing.

Change the beliefs, attitudes, and perceptions of media about chronic pain as a disease.

Increase media coverage and support evidence based reporting of chronic pain

Change the beliefs, attitudes, and perceptions of the media about the relationship between chronic pain and the opioid epidemic

Decrease media coverage that conflates the opioid epidemic with chronic pain

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1190100 2017-09-10T10:41:19Z 2017-09-10T10:41:19Z Data Support that Diet Can Reverse Heart Disease https://goo.gl/wTDRgQ

We are writing to provide our perspectives in response to a recent interview by Steven Nissen, MD, in MedPage Today that we hope will be useful to its readers. We have great respect for Nissen and honor his many contributions to the field.

Like Nissen, we have devoted our careers to factually-accurate, science-based medicine. We agree with his comments that statins are of proven benefit in many patients with coronary heart disease. We share his concern that patients may be misled by irresponsible health claims made by some (but not all) supplement manufacturers and by some promoters of different diet and lifestyle programs.

However, Nissen's statement that, "There is no diet that's been shown to reverse heart disease" is not supported by the data.

Used appropriately, statins can be useful, and other medications can be lifesaving, but so are comprehensive lifestyle changes. Informed physicians will optimize all of these for their patients. Even pharma companies recommend that if one can achieve optimal reductions in LDL-cholesterol by diet and lifestyle, that should be the first step.

The problem is that many physicians do not recommend diet and lifestyle changes intensive enough to have an effect. In our randomized, controlled trials, we found a 40% average reduction in LDL (i.e., comparable to statins) in patients who were asked to consume a whole foods plant-based diet low in both fat and refined carbohydrates (along with moderate exercise, meditation/yoga, and social support).

One of us (Williams) decreased his LDL-cholesterol from 170 to 90 mg/dl by making these changes in diet.

Randomized controlled trials conducted at the non-profit Preventive Medicine Research Institute and UCSF documented that patients with moderate to severe coronary heart disease who made these lifestyle changes showed statistically significant and clinically significant reversal of their coronary heart disease and its ischemic manifestations in all measures of coronary anatomy and physiology.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1189925 2017-09-09T11:06:53Z 2017-09-09T11:06:53Z Antidepressants could delay Parkinson's progression https://goo.gl/8S3CEM

A 50-year-old antidepressant could stop the buildup of a brain protein involved in Parkinson's disease, marking a discovery that could bring us closer to slowing the condition.

A new study led by researchers from Michigan State University in Grand Rapids found that people treated with tricyclic antidepressants were less likely to require drug treatment for Parkinson's disease.

On further investigation, the researchers found that rats treated with the tricyclic antidepressant nortriptyline demonstrated a reduction in levels of abnormal alpha-synuclein (a-synuclein) protein in the brain.

Lead study author Tim Collier, of the Department of Translational Science and Molecular Medicine at Michigan State University, and colleagues recently reported their findings in the journal Neurobiology of Disease.

Parkinson's disease is a progressive neurological disorder characterized by tremors, limb stiffness, and problems with movement and coordination.

Around 60,000 people in the United States are diagnosed with Parkinson's every year, and up to 1 million people in the U.S. are living with the disease.

A buildup of the protein a-synuclein is considered a hallmark of Parkinson's disease. Though this protein is present in the healthy brain, in the brains of people with Parkinson's, it can form toxic clusters that destroy nerve cells.

As such, researchers are on the hunt for ways to reduce a-synuclein buildup in the brain, with the aim of slowing Parkinson's disease progression. The new study from Collier and team may have identified such a strategy.

Norm DeLisle