tag:ltcreform.posthaven.com,2013:/posts Health and Disability 2017-12-15T11:00:12Z Norm DeLisle tag:ltcreform.posthaven.com,2013:Post/1217109 2017-12-15T11:00:12Z 2017-12-15T11:00:12Z Net neutrality repeal may diminish telemedicine access, harm small practices https://goo.gl/aEhHrc

“If I can do that, that would be a very healing experience,” he said. “Well, repealing net neutrality may screw that up. They may charge those patients a zillion dollars for the necessary bandwidth I need to communicate and to do my job better.”

Cyber protection, competition

Another hurdle to telemedicine if net neutrality is repealed involves encryption. Everything that is transmitted through telemedicine portals has tomust be encrypted to meet HIPAA laws.

“Say an ISP decides they no longer want encrypted traffic to go across their network because they want visibility into everything that goes across their line. At that point we’re just hoping that they’re going to continue to pass that traffic,” Greg Hall, IT director for the Center for Telehealth at the University of Mississippi Medical Center, told Healio.com. “If they decide they don't want to or want us to pay them additional fees to have the traffic that is encrypted then suddenly we’re stuck. They could very easily block it all and we can no longer do a telehealth encounter because we can’t pass our traffic over our networks. Our business is completely stopped because one ISP somewhere on the chain has decided that they don't like that kind of traffic.”

Even if major ISP providers such as AT&T, Verizon and Sprint continue to operate under the guidelines of net neutrality and do not restrict access, there still could be hurdles to telemedicine, Hall said.

“You have a small rural ISP that decides, ‘Hey, no we don’t want to play all those games, we want to charge a certain fee for certain traffic’ and say that happens to be the video traffic that we push across the internet at some point. All of the sudden, that small little provider, just because we happen to pass some traffic across their network, could very easily cripple access at that point.

“The main concern is not even just, ‘Hey, our bill comes from AT&T every month.’ It doesn't always just go over AT&T lines, so we have to worry about every ISP that our traffic happens to go across to get from one location to another.”

And although major ISPs might say there will be no changes, Hall said there are examples where that has not been the case. Previously, he said, larger providers blocked video applications from going across their network because they competed with another service the provider already offered.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1215982 2017-12-13T11:32:20Z 2017-12-13T11:32:20Z A Milestone for CAR T Cells https://goo.gl/H4bHcW

More than 7 years have passed since the regression of advanced lymphoma was first reported in a patient who had undergone the infusion of T cells engineered to express a chimeric antigen receptor (CAR) targeting the CD19 antigen expressed on the surface of both normal and malignant B cells.1Subsequent trials of CD19-targeted CAR T-cell therapy showed a complete response in some patients with relapsed or chemotherapy-refractory hematologic cancers for which there were no effective therapies.2-5

The recent approval of anti-CD19 CAR T-cell therapy for the treatment of relapsed or refractory acute lymphoblastic leukemia and large B-cell lymphomas by the Food and Drug Administration sets a new standard of care for the patients who receive these therapies. However, the approval also comes with substantial economic challenges because of the high cost of care, a challenge that will grow as the indications for these therapies expand in the future. Policies will need to be developed to ensure that eligible patients receive these potentially curative therapies.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1215977 2017-12-13T11:29:52Z 2017-12-13T11:29:52Z Groundbreaking New Drug Successfully Suppresses Huntington's Protein In Human Trial https://goo.gl/SYhiXT

In what is thought to be one of the biggest breakthroughs in the treatment of neurodegenerative diseases in the last 50 years, researchers have created a drug that may one day slow the progression of Huntington's disease

A tragic neurodegenerative disease, Huntington's is caused in most people by a single genetic mutation, although a small number of others do develop the genetic fault through random mutation. The gene in question codes for a protein known as huntingtin that builds up in the brain, causing the progressive degeneration of the nervous system and significantly harming movement, learning, thinking, and emotions.

The new drug is designed to disrupt the expression of this faulty gene, preventing the production of huntingtin and thus hopefully slowing the onset of the disease.

Known as IONIS-HTTRx, the drug does not target the gene itself, but is instead a piece of synthesized genetic code that binds to the piece of messenger RNA that transports the information needed to build huntingtin around the cell. By doing this, the drug destroys the messenger molecule before the damaged proteins form. The researchers were able to dramatically cut the levels of this protein found in the brain.

It is important to stress that the trials carried out so far were not looking at whether or not the new treatment prevented the symptoms of the disease from progressing, so the researchers cannot say unequivocally that it works. Instead, they were looking at the level of the toxic protein found in the nervous system.

They found that the level of the toxic protein in the brain was linked to the dose of the medicine, suggesting that the new drug does indeed target the manufacturing of the protein as expected. This is coupled with the fact that the drug had no adverse effects and was seemingly safe.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1215439 2017-12-12T11:24:54Z 2017-12-12T11:24:54Z Traveling With Chronic Pain? Tips From a Spoonie https://goo.gl/koSg4W

Last January, I had a terrible flare of what I soon learned was psoriatic arthritis. I had to learn how to travel across the country by myself with an uncontrolled autoimmune disorder. I had to adjust my daily life to being a spoonie. (“Spoons” are finite units of measurement that those of us with chronic illnesses use to budget our energy throughout the day – more explanation here.)  But how could I adjust my travel plans?

Airports Are Big. Flights Are Long. Plan Ahead.

• Purchase your tickets well in advance so you can select your seat – and buy as much comfort as you can afford. Take Business class if you can swing it. If you’re in economy, try to get a seat with extra leg room. And take the window seat. If I can avoid basic economy center seats for the rest of my life, I will.

• Get to the airport early and check your luggage. Even if it’s a carry-on size roller-bag. When I fly by myself, I only carry on the backpack that I can put under the seat in front of me. Managing extra luggage just means additional pain for my hands and wrists.

• Use a wheelchair. When I asked for travel tips, one of the things my friends and family repeatedly advised was “swallow your pride.” I have a hard time with this. I want to muscle through. But, even in small airports, I find it’s a mistake to think I can muscle through and go without a wheelchair. (And even if I can, I’ve then spent a spoon or two that I might want to save for after I land at my destination!)

You can reserve a free wheelchair service when you buy your ticket. But whether you reserved it ahead of time or not, when you arrive at the ticketing counter to check that luggage, let the agent know that you need a wheelchair. Usually, someone wheels a chair out for me to sit in while they dispatch a “pusher” out to me. Again, planning well in advance is necessary, because this can take a while if it’s a smaller airline and has a shared pool of wheelchair attendants. The service is always free, but it is customary to tip your wheelchair attendants. They are so nice and friendly, it’s hard not to overflow with gratitude.

The wheelchair attendant will scan your boarding pass – this is very important, because for some airlines, that’s the only way to ensure you’ll have one waiting on the ramp upon arrival at your destination. (Yes, you added it to your ticket when you bought it, but that doesn’t guarantee someone will be waiting. Also, just because you added it to your ticket doesn’t mean anyone will notice until you say something at check-in.)


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1211553 2017-12-05T11:16:08Z 2017-12-05T11:16:08Z CVS is buying Aetna in massive deal that could transform health care https://goo.gl/nmu9kJ

If approved, the $69 billion acquisition -- $77 billion including debt -- would drastically remap the healthcare industry. CVS Health (CVS)is a massive drugstore chain and prescription drug insurer, while Aetna (AET) is one of the nation's largest health insurers.

It would also go down as the largest health insurance deal in history, far exceeding Express Scripts (ESRX)' $29 billion acquisition of Medco in 2012, the last record-holder.

The acquisition is not a done deal. It will have to be approved by antitrust regulators, who have been skeptical of similar health care mergers.

Buying Aetna puts CVS in a better position to compete with other integrated health care providers, such as UnitedHealthcare (UNH) and pharmacy benefits manager Optum. PBMs like Optum and CVS's Caremark help manage prescription drug plans for commercial health insurers.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1211551 2017-12-05T11:12:25Z 2017-12-05T11:12:25Z Normalizing Feeding Tubes https://goo.gl/YuRWeV

A lot of the heavy duty stuff that comes with being an old cripple kind of scares me some, but not a lot. Like for instance, being on a ventilator. I can’t deny that I think being on a ventilator would be a real drag, mostly for the pain in the ass of it all. Being hooked up to this blinking, beeping thing all day? Having somebody constantly follow you around in case you need them to stick a tube down your throat via your trach to suction out mucous? It seems like that would add a lot to the daily routine.

A lot of people are so scared about being on a ventilator that they say they’d rather be dead. Come on, really? Dead? Once you make a decision like that there’s no taking it back. You can’t try it for 30 days and return it free if you’re not completely satisfied, paying only shipping and handling. Maybe people wouldn’t be so freaked out about being on a ventilator if somebody did something to normalize the experience. The way that we normalize something in the U.S. is to make a TV show about it. There ought to be a show about a crime-solving dude who’s on a ventilator. He’s crippled as all hell but he’s a crime solving genius so whenever the police have a stumper of a crime that really busts their balls they turn to him and he solves it every time. He has a nurse who follows him around and suctions him every now and then and she’s also his wise-cracking sidekick. A show like that would convince a lot of people that being on a ventilator is not just okay, it can even be cool.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1211143 2017-12-04T10:47:15Z 2017-12-04T10:47:15Z Hacking Health Care: Silicon Valley’s Solutions To Elderly Care, Diabetes And More https://goo.gl/ezgrvN

While Silicon Valley’s technological breakthroughs have transformed the way people live, work, and play, health care remains an arena bogged down by archaic technology and inefficient paperwork. At the 2017 Forbes Healthcare Summit, executives from startups Color, Virta Health, Honor and Collective Health gather to discuss how they apply the hallmarks of their industry — user-friendliness, big data, virtual communication — to everything from caring for elderly parents to managing your employees’ health insurance plans.

Seth Sternberg, who cofounded non-medical homecare company Honor, recalls getting the idea for the startup during a visit with his mother. The California transplant, whose mom lives in Connecticut, noticed that she was driving much slower than he’s used to. “Mom, why are you driving so slowly?” Seth remembered asking. “Well, driving is harder than it used to be,” his mom replied.

The incident got him thinking about his mother’s future, when she may not be able to drive at all. “I don’t want to be the kid that says, mom, sorry, you now have to move to California to be with me,” Sternberg says. As it stands, if a person loses the ability to perform a few necessary tasks — such as cooking, bathing or getting groceries — they will no longer be able to live independently in their homes. Sternberg started to look into non-medical homecare for seniors — services that provide caretakers who help with daily activities — and found an extremely fragmented industry that has over 30,000 players but no one owning more than 0.5% of the market.

The serial entrepreneur, who cofounded web messenger Meebo before selling the app to Google in 2012, decided to start Honor. Unlike traditional homecare services that require advance booking and minimum number of hours per visit, care professionals booked through Honor’s app can show up in as little as two hours, and stay for only an hour. Some people use it for just a couple weeks — say, right after a knee surgery — while others use it to find long term, around-the-clock care. The app is easy to navigate and allows caretakers to quickly view allergies, favorite activities, medications and more, while children can see who’s coming to the house and when they arrive and depart.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1209404 2017-11-30T11:28:47Z 2017-11-30T11:28:47Z Here's a New Reason You Should Worry About Antibiotics https://goo.gl/pfZKoX

There’s a global push for doctors and patients to use antibiotics more judiciously, largely because overusing them is contributing to growing resistance—meaning that some infections that were previously treatable no longer respond well to medications. Now, a new study in mice suggests that antibiotics may come with another potential health consequence. They could be interfering with the microbiome—a community of bacteria that live in the gut and elsewhere—and these changes may be passed down through generations and may cause disease.

In the study, published Monday in the journal Nature Microbiology, researchers gave healthy pregnant mice either a normal microbiome or one that had been exposed to antibiotics. Once the mice pups were born, the researchers found that the microbiome changes in the mothers had been passed on to their offspring.

The researchers also looked at a group of mice that were engineered to be at a higher risk for developing colitis, a type of inflammatory bowel disease (IBD). The researchers followed the offspring of these mice for five months and discovered that the pups who had been born to a mother with a microbiome perturbed by antibiotics had substantially worse colitis than the mice that inherited a normal microbiome.

Prior studies in humans have linked antibiotic exposure to a higher risk for IBD, which is thought to affect about 1.3 million Americans. Blaser says that the new study’s findings add to the evidence that antibiotic overuse may cause health complications even beyond antibiotic resistance.

“A lot of pregnant women are taking antibiotics, and a lot of teen girls are taking antibiotics,” says Blaser. “We are concerned that it could have an effect on the next generation.”

They hypothesized that the exposed microbiomes would impact the disease risk of the mice pups, but Blaser says the researchers were surprised by how substantial the effect was.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1209403 2017-11-30T11:26:16Z 2017-11-30T11:26:16Z CarePredict tracks seniors’ health for caregivers in a natural way https://goo.gl/1aT4u6

Health-technology veteran Satish Movva founded CarePredict to help him take care of his now 90- and 80-year-old parents. They live 10 miles away from where he lives in western Broward County, and because of their advancing age, he could not rely on one to keep an eye on the other.

He noticed that changes in activity and behavior patterns showed up well before the underlying issues manifested into medical conditions and sought a system to observe his parents continuously and let him know of these changes early enough to intervene.

Finding the existing technologies inadequate and outdated, Movva set about creating a first-in-the-industry system to observe the daily activity and behavior patterns of each parent individually and with privacy, and alert him to anomalies. Movva has worked in technology for 30 years, 23 of them in healthcare, including being the founding CIO for Sheridan Healthcare and creating its first mobile EMR device on the Palm Pilot. He also created the first web-based home-care platform at Interim Healthcare.

CarePredict is an AI-driven platform for elder care that uses deep learning to provide insights based on the daily activities of seniors. It starts with a wearable — a bracelet — that collects data that is sent to an app.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1209400 2017-11-30T11:23:10Z 2017-11-30T11:23:10Z Senior Benefits: Find Help Paying for Everyday Needs
This is part of the National Council On Aging......
https://www.benefitscheckup.org/

Medications

You may be eligible for programs that save money on medications and other health care costs (such as copays and deductibles). People who have applied for these benefits can save, on average, $4,000 annually in assistance.

Examples of Medication Programs

  • Medicare Part D
  • Medicare Low Income Subsidy (LIS)/Extra Help
  • State Pharmaceutical Assistance Program (SPAP)
  • Patient Assistance Programs
  • Prescription Savings and Discount Cards

Health Care

You may be eligible for programs that can provide health insurance that pays for your medical costs and other medical expenses. You can also get health care assistance through chore services, home care, nursing home care, and waiver benefits.

Examples of Health Care Programs

  • Medicare Savings Programs
  • State Medicaid Programs
  • Home and Community-Based Services (HCBS)
  • Health Centers for Primary Health Care and Dental Services
  • Program of All-inclusive Care for the Elderly (PACE)
  • Chore Services

Income Assistance

You may be able to get help from programs that can provide you with cash assistance so that you can have a minimum level of income to pay for basic needs such as: food, clothing, and shelter.

Examples of Income Assistance Programs

  • Supplemental Security Income (SSI)
  • State Supplemental Income Program
  • General Assistance
  • Retirement Programs
  • Pension Information and Assistance Services

Food & Nutrition

You may be eligible for nutrition assistance programs that gives you a cash benefit so that you can buy nutritional foods to help you stay healthy. You can also get help from food/meal assistance programs which can be delivered to your home or at various community locations.

Examples of Food & Nutrition Programs

  • Supplemental Nutrition Assistance Program (SNAP)
  • Home Delivered and Congregate/Group Meals
  • Commodity Supplemental Food Program (CSFP)
  • The Emergency Food Assistance Program (TEFAP)
  • Senior Farmers' Market Nutrition Program

Housing & Utilities

You may be eligible for housing programs that can help you find and pay for affordable housing or help you keep your home. There are also home repair programs that can help you fix critical and safety issues found in your home or help pay for your household utilities (e.g. heating, cooling, and phone).

Examples of Housing & Utilities Programs

  • HUD and Section 8 Housing Programs
  • Low Income Home Energy Assistance Program (LIHEAP) and Weatherization
  • Lifeline and Link-Up Programs
  • Budget Mobile, Assurance Wireless, and Safelink Wireless Programs
  • Home Repair and Renovation Programs
  • Home Heating Credit

And More.....



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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1209246 2017-11-29T11:51:18Z 2017-11-29T11:51:18Z NEUROFEEDBACK SHOWS PROMISE IN TREATING TINNITUS https://goo.gl/VXGJRb

Researchers using functional MRI (fMRI) have found that neurofeedback training has the potential to reduce the severity of tinnitus or even eliminate it, according to a study presented today at the annual meeting of the Radiological Society of North America (RSNA).

Tinnitus is the perception of noise, often ringing, in the ear. The condition is very common, affecting approximately one in five people. As sufferers start to focus on it more, they become more frustrated and anxious, which in turn makes the noise seem worse. The primary auditory cortex, the part of the brain where auditory input is processed, has been implicated in tinnitus-related distress.

For the study, researchers looked at a novel potential way to treat tinnitus by having people use neurofeedback training to turn their focus away from the sounds in their ears. Neurofeedback is a way of training the brain by allowing an individual to view some type of external indicator of brain activity and attempt to exert control over it.

“The idea is that in people with tinnitus there is an over-attention drawn to the auditory cortex, making it more active than in a healthy person,” said Matthew S. Sherwood, Ph.D., research engineer and adjunct faculty in the Department of Biomedical, Industrial and Human Factors Engineering at Wright State University in Fairborn, Ohio. “Our hope is that tinnitus sufferers could use neurofeedback to divert attention away from their tinnitus and possibly make it go away.”

The researchers gave the participants techniques to help them do this, such as trying to divert attention from sound to other sensations like touch and sight.

“Many focused on breathing because it gave them a feeling of control,” Dr. Sherwood said. “By diverting their attention away from sound, the participants’ auditory cortex activity went down, and the signal we were measuring also went down.”

A control group of nine individuals were provided sham neurofeedback — they performed the same tasks as the other group, but the feedback came not from them but from a random participant. By performing the exact same procedures with both groups using either real or sham neurofeedback, the researchers were able to distinguish the effect of real neurofeedback on control of the primary auditory cortex.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1209245 2017-11-29T11:49:21Z 2017-11-29T11:49:21Z PCPs Deliver Best Inpatient Care, Study Suggests https://goo.gl/AkGqGf

Amid the steady rise of the hospitalist model, inpatients cared for by their own primary care physicians experience lower length of stay and reduced mortality compared to hospitalists and covering generalists, according to a study published by JAMA Internal Medicine.

These findings appear to contradict previous research suggesting that hospitalists delivered more efficient and higher quality care, which authors of the new study allege faced substantial limitations. Previous studies, for example, did not differentiate among nonhospitalist physicians based on prior knowledge of the patient.

The study compared patient outcomes among three types of inpatient care delivery:

  • PCPs with existing relationships with the patients
  • Hospitalists with extensive knowledge of the hospital
  • Generalists without previous familiarity with the patients or the hospital
"Our study is the first to distinguish between these two different types of outpatient physicians compared with hospitalists," wrote Jennifer P. Stevens, MD, MS, from Beth Israel Deaconess Medical Center in Boston, and colleagues in their report. 


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1208582 2017-11-27T10:57:52Z 2017-11-27T10:57:52Z What practical tools can I use to redesign care?
Decent Summary.....
https://goo.gl/w7VRAa

The framework below illustrates the key steps an organization must address to improve health and lower costs for people with complex health and social needs. Whether you have an existing care model or are just beginning to plan a program for your complex needs population, we encourage you to work through this process to refine and focus your care interventions.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1206809 2017-11-22T12:20:17Z 2017-11-22T12:20:17Z FDA OKs Epinephrine Auto-Injector for Small Children https://goo.gl/VR7j3w

The FDA has approved the first epinephrine auto-injector specifically designed for infants and small children weighing 16.5-33 pounds, kaléo, the device's manufacturer, announced Monday.

The AUVI-Q 0.1 mg device is "specifically designed for the treatment of life-threatening allergic reactions, including anaphylaxis, in infants and small children weighing 16.5 to 33 pounds (7.5 to 15 kilograms) who are at risk for or have a history of serious allergic reactions," the company said in a press release. The device has a shorter needle and lower dose of epinephrine compared with injectors currently on the market. It also includes electronic voice instruction and visual cues to help with administration.

"Until now, healthcare practitioners and caregivers to infants and small children have not had an epinephrine auto-injector with an appropriate dose of epinephrine available to them, potentially causing some delay in the administration of epinephrine in a life-threatening allergic emergency," said Vivian Hernandez-Trujillo, MD, a pediatric allergist at Nicklaus Children's Hospital in Miami, in the release. "Having an epinephrine auto-injector with a needle length and dose specifically designed for infants and small children should help alleviate concerns around hitting the bone or injecting too much epinephrine."

More children are getting treated for anaphylaxis, the company noted, citing a study that found a 129.8% increase in emergency department visits for the condition by children age 4 and younger between 2005 and 2014.

"The approval of an epinephrine auto-injector specifically designed for infants and small children is timely, especially given the recent changes to guidelines recommending that certain high-risk infants, as young as 4 to 6 months old, be introduced to peanut-containing foods," said Eleanor Garrow-Holding, president and CEO of the Food Allergy & Anaphylaxis Connection Team, in the press release.

"We are pleased that the pediatric allergy healthcare community and parents of infants and small children with life-threatening allergies will have the ability to obtain an FDA-approved epinephrine auto-injector in the event of an allergic emergency."

The device is expected to become available to patients in the first half of 2018, according to the company, which is based in Richmond, Virginia.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1206807 2017-11-22T12:18:59Z 2017-11-22T12:18:59Z COPD: Why Appropriate Device Selection is Important

Video.....

https://goo.gl/1KMMkm

Device selection for the administration of long-acting bronchodilators is an important factor for the treatment of people diagnosed with COPD. At the American Thoracic Society International Conference in Washington, D.C., we talked to some of the investigators presenting data on this subject.

I am your host, Dr. Prathima Setty and I would like to welcome my three guests to the program. Speaking with me today are Dr. Sidney Braman, a pulmonologist and Professor at Mount Sinai Health System; Dr. Donald Mahler, a pulmonologist and Emeritus Professor of Medicine at the Geisel School of Medicine at Dartmouth; and Dr. Nicola Hanania, a pulmonologist and Associate Professor of Medicine at the Baylor College of Medicine Airways 
Clinical Research Center.

Doctors, thank you for being here to share your insights on delivery devices for long-acting bronchodilators for COPD.

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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1206545 2017-11-21T11:58:29Z 2017-11-21T11:58:29Z How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot https://goo.gl/FySy65

For those of us with EI (environmental illnesses), the holidays are especially brutal.  What were once happy times surrounded by family and friends become increasingly isolating experiences.  Depending on how bad off we are with things like fragrance sensitivity (which, next to fruit cake is the worst part about inviting Aunt Betty) or severe fatigue (where you just want to curl up into a ball under the dinner table), more and more we are faced with having to choose between trying to brave a family gathering only to end up sick in bed for weeks or convincing ourselves we will just stay home and write that novel.

In response to a heart-felt plea for help from one newly aware Canary who was torn between wanting to accommodate her family and fear of going overboard and getting sick, I wanted to reach out to her and give her some advice I wish someone had told me.  This is more or less what I said:

This cluster of conditions that we call EI is an insidious one, for so many reasons.  None of which are your fault.  And understanding the underlying cruel irony of what is at play will help you really believe that.  This is what I think you should keep in mind: 

1: It is invisible so we are constantly having to “convince” people of its authenticity. 

2: It puts us in the position of having to ask other people to help prevent us from getting sick, in other words, potentially putting them at an imposition which feels very awkward. 

3: We long for the lives we had before we got sick. When we were “normal” and could move through the world with any level of anonymity we wanted just like everyone else. 

4: We have to announce to the world our personal health information while bracing for the possibility that we will be ridiculed for it. 

5: We never know when fragrance is going to jump out and hit us so we often hope for the best and maybe don’t say something as often as we should in the prayer that it won’t happen. But living on this kind of edge all the time is extremely stressful. 

6: We feel forced into a position of having to apologize for our very existence on a regular basis.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1206000 2017-11-18T12:30:27Z 2017-11-18T12:30:27Z Too many women with PCOS go undiagnosed https://goo.gl/86qr9a

Polycystic Ovarian Syndrome (PCOS) is the most common hormonal disorder in women of reproductive age. It can put those affected at risk for serious health conditions including high blood pressure, heart disease and diabetes. PCOS can also cause infertility, a loss of hair on the scalp, excess body hair, acne and weight gain.

The disorder affects between 7 and 10 percent of women of childbearing age.

I am one of them.

During my sophomore year of college, I noticed I was getting more acne around my chin and jawline, but attributed the breakouts to high levels of stress, abnormal sleep habits, poor diet and alcohol. My teenage years were plagued by irregular, heavy periods and obvious mood swings.

Sitting in my doctor’s office, alongside my mother, I was diagnosed with PCOS after a dermatologist with the disorder suggested I get an ultrasound. I was 19. I was told I would face fertility issues. To reduce side effects, I was prescribed birth control. That was it. The conversation ended there.

I wasn’t informed of the common mental-health issues associated with PCOS. I didn’t know depression and anxiety — both of which I experienced a few years later — are reported by women with the disorder at a higher rate.

I didn’t know the unwanted facial hair under my chin was a common symptom. Instead I joked the hair was a reflection of my grandmotherly habits.

The number one issue facing women with PCOS is awareness, or lack thereof, says Megan Stewart, founder of the PCOS Awareness Association. Stewart says the absence of information surrounding the disorder comes from staunch disagreements among those within the medical profession.

“A lot of medical professionals aren’t well versed [with PCOS],” says Stewart. “So when they see the symptoms, they may equate it to thyroid complications, or even Hashimoto’s disease.” She also attributes the more than 50 percent of women with PCOS who go undiagnosed to the same disconnect.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1205854 2017-11-17T10:59:43Z 2017-11-17T10:59:43Z FDA Approves Benralizumab for Severe Asthma https://goo.gl/SJYzT3

The FDA has approved AstraZeneca's biologic drug benralizumab (Fasenra) for the add-on maintenance treatment of patients age 12 years and over with severe asthma with an eosinophilic phenotype, the drugmaker announced late Tuesday.

Approval was based on pivotal trials showing up to a 51% reduction in the annual asthma exacerbation rate versus placebo in patients with uncontrolled, severe asthma and high levels of eosinophilia. The drug also showed an overall adverse event profile similar to that of placebo in the trials, and users had median 75% reductions in daily oral corticosteroid use.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1204745 2017-11-12T11:37:39Z 2017-11-12T11:37:39Z We heard you — incontinence affects men too. Here’s what you need to know https://goo.gl/rLgRGP

As men age, the simple act of urinating can get complicated. Prostate surgery often leaves men vulnerable to leakage when they cough, sneeze, or just rise from a chair. Or the bladder may become impatient, suddenly demanding that you find a bathroom right now. “Thousands of years ago, it was not as much of an issue,” observes Dr. Anurag Das, a urologist at Harvard-affiliated Beth Israel Deaconess Medical Center. “There were lots of trees, and you could just find one and go.”

But tricky bladders can be whipped into shape. The first step is a careful assessment of what triggers those difficult moments. Often your doctor can suggest helpful strategies and possibly medication to improve urinary control.

Urinary incontinence means the accidental or involuntary loss of urine from the bladder. Many cases involve slight “dribbling.” The most common types are urge incontinence and stress incontinence. The usual causes of urge incontinence in men are involuntary contractions of the bladder muscles (overactive bladder). This is sometimes related to long-term blockage from an enlarged prostate. “You feel the urge to go but you start leaking before you make it,” Dr. Das says. “It could be a few drips, or it could be a larger amount if you can’t find the bathroom in time.” Many men notice that certain triggers set off their urge incontinence, such as hearing running water, entering a cold room, rising after sitting, or even just inserting the key in your home’s door lock.

Stress incontinence refers to urine leakage that occurs when coughing, sneezing, lifting a heavy object, or other activity. In men, this is usually caused by problems in the rings of muscle, or sphincters, that squeeze closed to seal off the bladder.

“If they are weak or damaged, then coughing, sneezing, running, or jumping can cause leakage,” Dr. Das says. In men, the most common cause of stress incontinence is sphincter damage after prostate surgery. Radiation treatment for prostate cancer can also cause it. The doctor will ask questions to figure out what may be causing the problem and how severe it is. You may be asked to go home and keep a voiding diary, which is a careful record of how often you need to urinate and the circumstances or triggers that lead to leakage.

Here’s what you can do



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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1204744 2017-11-12T11:35:07Z 2017-11-12T11:35:07Z Scientists save child’s life by growing him new skin https://goo.gl/RoG24j

Doctors created enough skin to cover 80 percent of the body of a seven-year-old boy with a genetic disease — and it saved his life.

This isn’t the first time that doctors have used genetic engineering to grow new skin, but past attempts only grew a little bit. This time, doctors were able to cover nine square feet of the patient’s body. The boy, who has a genetic skin disease called junctional epidermolysis bullosa (JEB), had been expected to die. Now, two years after the surgery, he lives a normal life and is able to play sports and exercise, the doctors say. The results were published today in the journal Nature.

People with JEB have a genetic mutation that makes their skin blister easily and makes them more likely to develop cancer. (About 500,000 people worldwide have the condition.) The boy in today’s study developed a bacterial infection that made him lose skin on over two-thirds of his body, leaving him bright red and raw. He was sent to the burn unit at the Germany’s Children’s Hospital at Ruhr University. He was in a lot of pain, and doctors “had a lot of trouble keeping this kid alive,” Tobias Rothoeft, a doctor at the hospital, said in a press briefing.

As a final attempt, the doctors contacted Michele de Luca, director of the Center for Regenerative Medicine at the University of Modena and Reggio Emilia in Italy. de Luca had previously done a similar skin graft on legs, but nothing of this scale. First, his team took skin cells from the boy, including some stem cells, the immature cells that have the ability to develop into many different types of cells and keep growing. Next, they used a harmless virus to deliver a normal version of the gene into the skin cells, so that the genetically engineered cells did not have the mutation anymore. The engineered skin cells and stem cells were then used to grow skin in the lab. The skin was finally grafted back onto the kid's body.

The boy was in the hospital for more than eight months, but now he is healthy. The regenerated skin is good quality, says Rothoeft, and it allows him to do things like normal kids, without the painful blisters he had before. The study shows that just a few long-living stem cells can grow and maintain skin for a long time, de Luca said in the press briefing, which is hopeful for future skin grafts. Now, he is initiating further clinical trials for the therapy.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1204743 2017-11-12T11:33:32Z 2017-11-12T11:33:32Z Six Ways Amazon Could Up-End the Pharmacy Business
?????
https://goo.gl/sKJU3W

In June, the online retail giant moved into the roughly $800 billion U.S. grocery space by buying Whole Foods Market Inc. Drugs, a $450 billion industry in the U.S., are likewise most often sold from brick-and-mortar stores. Shoppers filling prescriptions frequently pick up toiletries, beauty supplies and dish soap — all retail items Amazon already sells. And the distribution chain for drugs has lots of middlemen whose markups Amazon can seek to undercut.

No wonder shares of drugstore chains CVS Health Corp. and Walgreens Boots Alliance Inc. have dropped sharply since analyst speculation about Amazon entering the pharmacy business intensified last month. On Monday, CVS Health said it would begin same-day delivery in several cities in early 2018, an apparent defensive move. Amazon has never commented on its pharmacy ambitions.

Drugs, which are light and don’t require in-person selection, “are a perfect match” for Amazon, said SSR Health analyst Richard Evans in a recent report.

Here are six ways the retailer could overturn the American pharmacy market:

1. Use its shipping power to destroy rivals
2. Become the ultimate buyer of cheap generics
3. Turn Whole Foods into Whole Drugs
4. Or buy into the pharmacy business
5. Or launch a startup of its own
6. “Alexa, refill my Lipitor”


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1204614 2017-11-11T13:00:14Z 2017-11-11T13:00:14Z Allergy Experts: Single Drug Best for Allergic Rhinitis https://goo.gl/M5i9fy

When it comes to treating seasonal allergies, one drug is often better than two: updated guidelines for the treatment of teen and adult patients with allergic rhinitis recommend initial treatment with an intranasal corticosteroid alone without an oral antihistamine.

The guidelines, appearing in the Annals of Allergy, Asthma and Immunology, follow a comprehensive review by a joint task force of the American Academy of Allergy, Asthma, and Immunology (AAAAI) and the American College of Allergy, Asthma, and Immunology 


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1204190 2017-11-09T11:17:04Z 2017-11-09T11:17:04Z 341 Days Without a C. difficile Infection: How Mercy Health – St. Anne Hospital Reduced C. difficile Infection Rates to Zero
It can be done.....
https://goo.gl/8E3m2w

C. difficile (C. diff) is the most common cause of healthcare–associated diarrhea in U.S. hospitals. Reducing healthcare-acquired Clostridium difficile infections (CDIs) is a complex and evolving battle. But it’s a battle that can be won. At Mercy Health — St. Anne Hospital, a 100-bed community hospital in Toledo, Ohio, my team and I used a multi-component strategy to reduce CDI rates and from July 2016 to July 2017 successfully eliminated all healthcare-associated CDI cases.

Prior to 2015, St. Anne Hospital had 40% more infections than predicted from baseline. Aiming to improve, my team and I worked with administration at both the hospital and system level to reduce the hospital’s rate of CDI. We began by initiating a “days since last” approach on the hospital’s daily safety call. Each unit shared their daily CDI-related information including number of patients on the unit with known or suspected CDI, number awaiting specimen collection or results, and what day of hospitalization CDI was confirmed. While this call was effective in bringing CDI to the forefront of attention, more needed to be done.

In 2015, we started tracking CDI cases by their location in the hospital. This showed nearly all cases of CDI patients spent time in the ICU, so my team and I ensured each ICU room underwent additional steps in terminal cleaning using bleach and UV light. In addition, we implemented a policy that required the cleaning of suspected and confirmed CDI patient rooms with bleach, exchanging privacy curtains, and cleaning with UV light at every transfer or discharge, regardless of location. This policy also emphasized routine bleach cleaning of areas within the ICU that were prone to frequent touch such as the nurses’ station, hallway handrails, and door handles.

We educated healthcare personnel on appropriate testing, the accuracy of PCR testing, and proper specimen collection. We then implemented policies to assess for diarrhea and C. difficile risk factors at the time of admission. Patients were asked about recent antibiotic use, healthcare visits, and diarrhea. Finding patients with diarrhea and at least one other risk factor would prompt the nurse to immediately isolate the patient and obtain an order for a stool specimen. Isolation was discontinued only if C. difficile was not detected by PCR in the ordered stool specimen, or if the patient did not have watery stool in a 24-hour period. The pediatric Bristol scale helped standardize the description of stool consistency by both staff and patients.

Simultaneously, the hospital’s Infection Prevention and Pharmacy departments implemented an antimicrobial stewardship program (ASP). This program engaged both clinicians and hospital leadership such as the CEO, CMO, infectious disease physicians, and managers from departments of quality, lab, nursing, and education. The ASP staff reviewed charts for duplication of antimicrobials and de-escalation when appropriate. The use of order sets with appropriate antibiotics for diagnoses such as sepsis, community-acquired pneumonia, and UTI was encouraged for emergency department use as well as for admission orders.

The final component of the intervention involved changing contact precaution signs placed outside of CDI rooms and adding a weekly glove and gown compliance report to the safety calls. The new contact precaution signs emphasized strict adherence to the use of gowns and gloves, hand hygiene, and bleach disinfection of shared patient care items before use by another patient.

Through these efforts, my team and I were able to reduce our hospital’s expected number of CDIs to 55% less than predicted in 2016. We are delighted to report that for the first half of 2017, we had no cases of CDI at all.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1204011 2017-11-08T11:31:02Z 2017-11-08T11:31:03Z U-M leading drive to cut opioids given after surgery https://goo.gl/iMRdg5

"Epidemic" is a tough word, and one often overused.

But it's now clear that we are now facing an enormous and relatively new public health epidemic from the overuse of and our growing addiction to opioid drugs.

And they aren’t all coming from back-alley pushers. Though the exact proportions are not clear, a significant percentage of opioids that enter the supply chain are prescribed by physicians, either to reduce postoperative pain or to help patients with mood disorders.

Research conducted by the University of Michigan further shows that about one-in-10 people who were not on opioid drugs before surgery became dependent on them.

Naturally, a lot of the stuff that does get into the black market comes from pharmacy “pill mills,” corrupt doctors and faked prescriptions and drug dealers. Maybe 35 percent of all prescriptions written are for "acute care" and involve postoperative pain relief, dentistry and emergency medicine ‒ long-accepted medical practice.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1203818 2017-11-07T11:56:37Z 2017-11-07T11:56:37Z My feeling of guilt for being disabled https://goo.gl/XqZujG

Whilst I struggle to cope with constant pain, fatigue and disability, the worst thing is My feeling of guilt for being disabled.

I am very fortunate to have found true love, even now I still have the feelings for my wife as I did when we were first dating, I love her but I am also in love with her and I can’t help but smile when I see her.

We struggle financially, we don’t have a social life and we don’t go on holiday and for that I feel like I have let my wife down. I love her and I want her to have an amazing life, I want her to have nice things and I want her to see this world. However because I am basically housebound, we don’t see very much.

Yes being disabled has robbed me of the ability to walk, it has turned me into quite a grumpy old git and it has meant that I have lost many things. However the effect it has had on my wife is the hardest thing to cope with.

This week we discussed about maybe having to swallow our pride and seek the help of a food bank, my wife is a proud woman and her thoughts on that was evident on her face.

We live in a 3 bed bungalow, it took my wife a long time to find somewhere for us to live after our previous landlord announced he was selling up. Many people turn their noses up at those of us that are reliant on welfare, this is partly due to the stigma of being on welfare and also down to the fact that councils now advise tenants to refuse to move out when a landlord asks, they say to take it right up to getting an eviction notice. This of course helps those facing losing a property, giving them more time, but it causes landlords to resent these tenants.

Rent in this part of the country is quite high, our property is £900 pcm and believe me when I say that is cheap, the property is fairly run down, we get damp, the front door has a half-inch gap top and bottom allowing a draft in and the bottom of the door is so rotten you can poke a hole in it. However it is a roof over our heads.

We get as allowed by the Local Housing Allowance rates £606 every 4 weeks which is £7878 a year, we have to pay £10,800 and of course now you don’t get the full council tax amount and that has to be topped up!


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1203597 2017-11-06T11:24:04Z 2017-11-06T11:24:04Z Gut bacteria 'boost' cancer therapy https://goo.gl/Doa8QU

Both studies were on patients receiving immunotherapy, which boosts the body's own defences to fight tumours.

It does not work in every patient, but in some cases it can clear even terminal cancer.

One study, at the Gustave Roussy Cancer Campus in Paris, looked at 249 patients with lung or kidney cancer.

They showed those who had taken antibiotics, such as for dental infection, damaged their microbiome and were more likely to see tumours grow while on immunotherapy.

One species of bacteria in particular, Akkermansia muciniphila, was in 69% of patients that did respond compared with just a third of those who did not.

Boosting levels of A. muciniphila in mice seemed to also boost their response to immunotherapy.

Meanwhile, at the University of Texas MD Anderson Cancer Center, 112 patients with advanced melanoma had their microbiome analysed.

Those that responded to therapy tended to have a richer, more diverse microbiome than those that did not.

And they had different bacteria too. High levels of Faecalibacterium and Clostridiales appeared to be beneficial, while Bacteroidales species were bad news in the study.

Tissues samples showed there were more cancer-killing immune cells in the tumour of people with the beneficial bacteria.

The team then performed a trans-poo-sion, a transplant of faecal matter, from people to mice with melanoma.

Mice given bacteria from patients with the "good" mix of bacteria had slower-growing tumours than mice given "bad" bacteria.

Dr Jennifer Wargo, from Texas, told the BBC: "If you disrupt a patient's microbiome you may impair their ability to respond to cancer treatment."

She is planning clinical trials aimed at altering the microbiome in tandem with cancer treatment.

She said: "Our hypothesis is if we change to a more favourable microbiome, you just may be able to make patients respond better.

"The microbiome is game-changing, not just cancer but for overall health, it's definitely going to be a major player."


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1203392 2017-11-05T11:58:07Z 2017-11-05T11:58:07Z FDA Widens Scope of Navigator – Information Tool for Expanded Access https://goo.gl/NHH4Sv

FDA is committed to expanding access to safe and effective treatment options for patients with rare, debilitating, and sometimes fatal diseases. These patients face unique medical challenges. Sometimes there isn’t an FDA-approved drug to adequately address the needs of a patient with a rare disease. Therefore, the agency needs to take new steps to enable more patients with unmet needs to get access to promising treatments prior to full FDA approval.

Two examples of the recent steps FDA has taken in pursuit of these goals are improvements we made to our Expanded Access Program and our Orphan Drug Program. These programs are high priorities of mine. They address the needs of patients with some of the most challenging conditions. Making sure there’s a close relationship with the efforts we take to expand pre-approval access to promising treatments, and the work of our orphan drugs program, is a key step toward maximizing opportunities for patients. To further achieve these goals, we’re announcing that FDA is widening the scope of the new Expanded Access Navigator tool, a comprehensive online information resource maintained by the nonprofit Reagan-Udall Foundation to facilitate pre-approval access to drugs. Previously this tool was rolled out for drugs that treat cancer. It will now apply to drugs that treat orphan diseases.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1203196 2017-11-04T11:55:03Z 2017-11-04T11:55:03Z About Chronic Pain https://goo.gl/v66SJF

Chronic pain is a debilitating disease which affects over 100 million Americans. It costs the United States in excess of half a trillion dollars each year and is the leading cause for why people are out of work.

The International Association for the Study of Pain (IASP) defines pain as, “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” Pain is a subjective experience in which there is no method for determining if an individual is in pain. Every person experiences chronic pain in a different way which makes it difficult to treat.  One of our primary goals is to understand the individual differences in each person’s pain so that we can ultimately tailor therapies to that person.

Learn more about the conditions below. You can also find more information on the American Chronic Pain Association’s Website.

Download Infographics

Opioid Drug Side Effects Infographic 


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1203194 2017-11-04T11:52:33Z 2017-11-04T11:52:33Z Lessons on Universal Coverage from an Unexpected Advocate: Richard Nixon https://goo.gl/bMzPfu

Starting from the time of President Harry Truman in 1945, policymakers from both parties have introduced dozens of plans to protect all or most Americans against the high costs of getting sick. Truman wanted to create a national health insurance fund run by the federal government (a pre-Medicare single-payer system). Over decades, Senator Edward Kennedy proposed multiple plans with varying designs. President Bill Clinton in 1993 advocated for government-regulated managed competition as a means to cover all Americans. But in 1974, President Richard Nixon advanced one of the most interesting proposals —introducing a number of novel ideas that have since been incorporated into many reform efforts.

Perhaps because of a childhood plagued by health problems (two of Nixon’s brothers died of tuberculosis, and he likely had a mild case himself), Nixon was deeply sympathetic to the health challenges facing Americans, and he came to believe in the necessity to cover everyone. As a Republican and advocate of limited government, however, Nixon sought narrow, targeted solutions to improve access to health care, relying as much as possible on private markets. The two main pillars of Nixon’s plan were an employer mandate and expanded coverage for the poor to “assure every American financial access to high quality health care.”

Nixon proposed that all employers be required to offer insurance to full-time employees. Employers and employees would share the premium “on a basis which would prevent excessive burdens on either,” a novel idea that would have extended coverage to a large proportion of working Americans. There would be a limit on total medical expenses per covered family, and the federal government would provide temporary subsidies to small and low-wage employers to offer employees affordable insurance.

For low-income people, the unemployed, the disabled, and other vulnerable groups, Nixon proposed a federal program with uniform benefits that would replace Medicaid. He wanted to peg premiums and out-of-pocket expenses to the income of the individual or family, so that a working family earning up to $5,000 (around $26,000 today) would pay no premiums at all. People with higher incomes could buy into this plan if they could not otherwise get coverage. In effect, Nixon proposed a buy-in to a federal, Medicaid-like program, rather than to Medicare, as Hillary Clinton proposed during her 2016 presidential campaign.


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Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1202442 2017-11-01T09:40:49Z 2017-11-01T09:40:49Z Black Licorice: Trick or Treat? https://goo.gl/5YhqkX

As it turns out, you really can overdose on candy—or, more precisely, black licorice.

Days before the biggest candy eating holiday of the year, the Food and Drug Administration (FDA) encourages moderation if you enjoy snacking on the old fashioned favorite.

So, if you’re getting your stash ready for Halloween, here’s some advice from FDA:

If you’re 40 or older, eating 2 ounces of black licorice a day for at least two weeks could land you in the hospital with an irregular heart rhythm or arrhythmia.

FDA experts say black licorice contains the compound glycyrrhizin, which is the sweetening compound derived from licorice root. Glycyrrhizin can cause potassium levels in the body to fall. When that happens, some people experience abnormal heart rhythms, as well as high blood pressure, edema (swelling), lethargy, and congestive heart failure.

FDA’s Linda Katz, M.D., says last year the agency received a report of a black licorice aficionado who had a problem after eating the candy. And several medical journals have linked black licorice to health problems in people over 40, some of whom had a history of heart disease and/or high blood pressure.

Katz says potassium levels are usually restored with no permanent health problems when consumption of black licorice stops.


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Norm DeLisle