10 Indispensables for Those with Chronic Pain and Illness

https://goo.gl/6R7I76
This piece is based on personal experience and on the thousands of emails I’ve received from those who live day-to-day with chronic illness (which includes chronic pain).

1. Email

I know the joy of hearing the actual voice of a loved one. That said, email is the principal way I communicate with people.

It’s hard for me to talk on the phone. It saps my energy quickly, partly because of the need for nonstop back-and-forth conversation. Unlike visiting with someone in person, when I’m on the phone, silences feel awkward and sometimes even suggest that something’s wrong.

In addition, I can’t control what time of day a call will come in. It could be when I’m about to nap, or while I’m still groggy from sleep, or after I don’t have an ounce of “juice” left. By contrast, I can send an email any time of day, and I can receive one at three in the morning and do nothing about it until I’m ready to “talk.”

Finally, I love the instant (and free) communication with people from all over the world. The other day, a woman in Syria wrote to me about my first book. That was truly special.

I use email for “business” too. For example, when I’m interviewed, more often than not, the person sends me questions via email and I answer them when I’m able. Of course, if it’s a podcast or radio show, I have to use the phone or Skype, but that can mean conducing the interview when I’m too sick to be talking.

Recently, I was interviewed over the phone, all the while with a bloody nose—it being one of the side-effects of a medication I’m on. It started bleeding a couple minutes after the recording started so I didn’t feel I could say anything. I held one nostril shut during the entire interview, quickly switching to a new tissue when necessary. I thought my voice sounded far too nasal but, afterward, the interviewer said it was fine. I can look back at this now and laugh, but at the time, it was terribly stressful. Good thing I wasn’t being videoed! Yes, I love email.



Misdiagnosis: A Chronic Condition Looking for a Cure

http://goo.gl/LPmvmn

According to a report in the BMJ Quality and Safety Journal, each year in the U.S. approximately 12 million adults or 1 out of 20 patients who seek outpatient medical care, are misdiagnosed in a way that could cause severe harm.

These alarming statistics are further reinforced by a new study from the Institute of Medicine (IOM)published in September, 2015, which predicts that: “most people will experience at least one diagnostic error — an inaccurate or delayed diagnosis — in their lifetime, sometimes with devastating consequences.”

The IOM report includes several examples where misdiagnosis occurred. A doctor mistook a blood clot in the lungs of a 33-year old woman for an asthma attack, leading to her death. An urgent care clinician misread an X-ray and diagnosed a 55-year old man with an upper respiratory infection instead of pneumonia. He died as a result. Doctors at a trauma center decided not to perform a CT scan on a 21-year old stabbing victim and missed a knife wound penetrating several inches into his skull and brain. A newborn baby suffered preventable brain damage when doctors failed to test for high levels of a chemical in his blood that had turned his skin yellow from head to toe.

What does this say about the current level of patient care in the United States?  It says that providers who are in a position to make a diagnosis for a patient, along with the patients and their caretakers or family, need to pay more attention to what is going on. It says that we patients are tolerating a healthcare system where we too often do not experience full disclosure from our clinicians. It is says that our system does not encourage collaboration and communication between healthcare clinicians and patients. It tells us that us that misdiagnosis is raising the cost of care for all of us.  It is says that each of us will face a potentially life threatening situation over the course of our healthcare that could be addressed and reversed if we pay attention.

We live with a system that is ill-designed to support the diagnostic process because our clinicians are limited by the time they are allowed to spend with each patient. As a result, some do not always follow up with tests and procedures that they have ordered.


To the Doctor Who Made Me Feel Powerless as a Patient

http://goo.gl/Zcw3z1

As a professional patient, I came prepared with my “medical resume.” My name, date of birth and address appeared across the top with my medical conditions listed below: asthma, pituitary adenoma, diabetes insipidus, lupus, Sjogren’s syndrome, Raynaud’s disease, rheumatoid arthritis and scleroderma. And as a result of a traumatic iatrogenic brain injury, I also included seizure disorder, dyskinesia and physical balance problems. I wanted you to know I was a responsible and fully informed patient.

When you read my medical history, you became apprehensive, doubtful and cold. You seemed to question my understanding of what I was doing in your office, and by your tone, you questioned my intelligence.

You gave me a cursory examination and were quick to end my consultation. I was left speechless by your behavior. I am a litigator and a former public defender in Manhattan and the Bronx. And as the only English-speaking person in my family, I have advocated for countless people in a myriad of settings, including doctors’ offices, but I couldn’t manage to advocate for myself. The minute I walk into any doctor’s office, something happens to my strong, loud mouthpiece, and I become a marshmallow. It’s like a gag is put on me. If I were a superwoman, the doctor’s office would be my Kryptonite. In part, that’s why I created the medical resume in the first place; I get so flustered around doctors I forget to mention important information.

This experience left me powerless. In the examination room, I believe doctors wield the power while patients sit, wait and obey. I lost my power to speak and voice my discontent when I saw the white lab coat with the embroidered “MD.” At first, I thought I was at fault. Maybe doctors don’t know how to see and hear patients like me. Maybe they’re afraid of the potential medical risks we represent. But then I realized it’s not just me. I’m within the expected range of patients you see and to whom you provide medical care.


Ottawa doctors behind breakthrough multiple sclerosis study

http://goo.gl/rZKoUp

A team of Ottawa doctors is preparing to publish a full report on its breakthrough multiple sclerosis treatment study that has so far eliminated the disease in those treated.

Eliminating MS completely and watching patients improve surprised both Freedman and Dr. Harold Atkins, a bone-marrow transplant expert, who started the study. The two originally set out to monitor the development of the disease and find a way to treat it. Their theory was this: Wipe out the entire immune system, reboot it with a transplant of the patient’s own bone marrow and wait for MS to regenerate.

“We thought we might be able to intercept one of the signals that initiates the disease and that would then give us a clue on how to treat it,” Freedman said. He jokes that they “had, in effect, failed because the disease never came back. No one expected to see zero disease activity after the transplant.”

The procedure has its risks. One patient died in an earlier phase of the trial. It was in 2001 or 2002, Freedman recalled, saying the death was due to the pill form of the drug Busulphan. Used early on in the experiment, the drug attacks the liver twice, both when it enters the body and again when it leaves. But within a year, the team had found that a new intravenous version of the drug improved patient safety tremendously.

Freedman had the task of trying to scare patients by telling them the risks.

“My job was to talk everybody out of it,” he said. “It really is the hardest thing they’ll have to do in their lives. It is a bit of a gamble, but with the fantastic team we have in Ottawa, it’s less of a gamble.”

All participants showed dramatic improvement, and none reported relapses, according to a study on the Freedman-Atkins treatment by a team of MS researchers at the Neuro and the Université de Montréal.

Also, bone-marrow stem-cell transplants to treat MS are not approved outside of clinical trials because while the disease itself is not deadly, the procedure is fatal in as much as five per cent of patients.

But Freedman questions the risk rate. He says the five-per-cent figure was from data collected in the 1990s as the team prepared for the experiment. That number has since dropped to about one per cent, he said.


Could vitamin D pills lower heart disease risk?

http://goo.gl/gVR47Q

Previous studies have suggested low levels of vitamin D in the body are to blame for increased Alzheimer's risksand the acceleration of multiple sclerosis.

In geographical areas where the sun is not abundant, many populations turn to vitamin D supplementation for health benefits.

Researchers from this latest study, led by Dr. Emad Al-Dujaili, say previous studies have suggested that vitamin D can block the action of an enzyme called 11-βHSD1, which assists in making the stress hormone cortisol.

High levels of this stress hormone can increase blood pressure by restricting the arteries, narrowing blood vessels and encouraging the kidneys to retain water, say the researchers.

Because vitamin D may reduce levels of cortisol in the body, the researchers theorized that it could improve exercise performance and lower risk factors for cardiovascular issues.


Allergy is the price we pay for our immunity to parasites

http://goo.gl/jvxuyA

New findings, published in PLOS Computational Biology, help demonstrate the evolutionary basis for allergy. Molecular similarities in food and environmental proteins that cause allergy (such as pollen), and multicellular parasites (such as parasitic worms), have been identified systematically for the first time.

A study led by Dr Nicholas Furnham (London School of Hygiene & Tropical Medicine), supports the hypothesis that allergic reactions are a flawed antibody response towards harmless environmental allergens.

It is thought that part of our immune system has evolved to combat and provide immunity against infection by parasitic worms. However, in the absence of parasitic infection, this same arm of the immune system can become hyper-responsive and mistakenly target allergenic proteins in food or the environment. This results in an unregulated allergic response, which can sometimes be lethal.


Discharge Planning Proposed Rule Focuses on Patient Preferences

Discharge Planning has always been a node of error creation......

https://goo.gl/6PyCwR

Today, the Centers for Medicare & Medicaid Services (CMS) proposed to revise the discharge planning requirements that hospitals, including long-term care hospitals and inpatient rehabilitation facilities, critical access hospitals, and home health agencies, must meet in order to participate in the Medicare and Medicaid programs. The proposed changes would modernize the discharge planning requirements by: bringing them into closer alignment with current practice; helping to improve patient quality of care and outcomes; and reducing avoidable complications, adverse events, and readmissions.  

The proposed rule would also implement the discharge planning requirements of the Improving Medicare Post-Acute Care Transformation Act of 2014 (IMPACT Act), which will improve consumer transparency and beneficiary experience during the discharge planning process. The IMPACT Act requires hospitals, critical access hospitals, and certain post-acute care providers to use data on both quality and resource use measures to assist patients during the discharge planning process, while taking into account the patient’s goals of care and treatment preferences.  

“CMS is proposing a simple but key change that will make it easier for people to take charge of their own health care. If this policy is adopted, individuals will be asked what’s most important to them as they choose the next step in their care – whether it is a nursing home or home care,” said CMS Acting Administrator Andy Slavitt. “Policies like this put real meaning behind the words consumer-centered health care.”

Good news for C. diff patients: The "Poop Pill" arrives.

Gives an entirely new flavor to organ donation.....

http://goo.gl/urcQVw

Fecal transplants may have just gotten a lot easier to swallow.

OpenBiome, the nation’s first stool bank, is beginning large-scale production of a poop pill. This week marks the first time such a pill will be commercially available to hospitals and clinics.

Early tests suggest the pill is highly effective and comparable to traditional, more invasive delivery methods — for instance via colonoscopy, enema or a plastic tube through the nose and into the stomach or intestines.

Developing a pill that would not dissolve because of what it was delivering was the engineering task faced by the company.

After about a year and a half of work and testing, researchers at OpenBiome came up with something they’re calling the Microbial Emulsion Matrix (MEM).

Basically they’re taking the poop and suspending it in oil. The oil prevents the water from dissolving the capsule. Then, they freeze the capsule. This doesn’t kill the bacteria but it does make them inactive, stopping them from breaking down the capsule. Only once the pill is inside the gut does it break down — this time from bacteria on the outside, instead of on the inside.


Moral Failure And Health Costs: Two Simplistic Spending Narratives

http://goo.gl/e18w7D

The conservative thesis holds that the demand for health care is unlimited because it has been, historically, a free good for many patients. Moreover, the argument runs, much illness is driven by bad personal health choices — for example, smoking and obesity, and the heart disease and diabetes that follows. Thus, much of our cost problem is actually the patient’s fault.

The “progressive” narrative is more convoluted and absolves the patient of blame. The progressives’ culprit is the way we have traditionally paid for care: fee-for-service payment of doctors and per-admission or per-procedure payment of hospitals. Progressives, and many in the health policy community, believe that cost growth is actually driven by doctors and hospitals seeking higher incomes. The piecework incentive encourages hospitals and doctors to over treat or render care that is completely unnecessary.


Advocate's Guide to MAGI

No, not those guys in the manger scenes......

http://goo.gl/DvwXJk 

Executive Summary

NHeLP is pleased to release the updated Advocate's Guide to MAGI. This Guide to Modified Adjusted Gross Income (MAGI) includes new sections on ACA tax filing and reporting requirements, and clarifies commonly asked questions such as when to count the Social Security income of dependents. We also updated IRS tax filing thresholds and exemption amounts, and it also has links to new IRS publications.  
 
The ACA established new rules for counting income and family size to determine eligibility for insurance affordability programs, including subsidized health insurance through the Marketplaces, Medicaid and CHIP. These new MAGI rules are applicable nationwide and can be complex. NHeLP’s Advocate’s Guide to MAGI is our free resource designed to help advocates understand and apply these new income counting and household composition rules. The Guide explains in detail how MAGI works, including who is and who is not subject to MAGI, the types of income counted and excluded, and how to figure out who is in an applicant’s “household” for determining eligibility.