Health and Disability

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I was at Coachella when I got the call.

“Alex? Can you hear me?”

Music from Father John Misty blared over my mom’s voice. “Sort of,” I said, curling up on the ground like an ailing arachnid and pressing my phone closer.

“I have something serious to tell you,” she said.

I knew that voice. It was the tone of a doctor who’s seen death up close. It was the sound of a wife and mother bearing unthinkable news. It was the noise from my nightmares reverberating into reality.

“Dad is in the ICU. He’s in serious condition.”

I bolted upright. “Is he stable?”

“He is at the moment, but the nurse said that these things are very touch and go.”

Touch and go? I felt sick. My arms trembled like pylons in an earthquake. “Should I come home?”

“I think you have to ask yourself if you want to be here to see him. He could die from this.”

The next hour was the worst of my life. I don’t remember large chunks of it. What I do remember haunts me. I remember running away from the stage repeating “Oh no oh no oh no.” I have a flash memory of dry heaving into a potted palm tree. I recall sobbing uncontrollably in the car. And as much as I’d like to, I can’t forget having a meltdown while packing my suitcase — crying, yelling, and pounding my fists on the ground like a five-year old.

My dad was dying of sepsis. And I felt helpless, 200 miles away at a concert in Palm Springs.

You might not have heard of sepsis. You’re not alone — almost half the population hasn’t either.

Sepsis is the body’s extreme reaction to an infection. The immune system essentially backfires and triggers inflammatory responses throughout the body. The infection can start anywhere — pneumonia, the skin, or a UTI. Sepsis is considered severe sepsis when organs exhibit signs of malfunctioning, like difficulty breathing or abnormally high heart rate. Septic shock takes hold when blood pressure drops to a critical low, even with treatment and intravenous fluids.

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How much progress have we made in understanding the link between our gut microbiome and neurodegeneration?

The field is still relatively young, but it has gained a lot of attention and momentum of late. This has been supported by the emergence of new technologies, especially advances in genomic sequencing and bioinformatics. We are now at a stage in the field where we can look into the basic biology of the microbiome and start asking questions about how it relates to diets, diseases, lifestyles and populations.

The connection to neurodegeneration is in its infancy. We have a few flashbulbs that have gone off in the dark, but we are far from having a clear picture. Our laboratory was one of the first to link Parkinson’s disease to the microbiome. This has gotten a lot of popular press, some of which has been hype and I worry about that long term because it makes promises to society that we don’t know yet if we can keep.

We are interested in learning whether the microbiome tells us anything that we can use to treat neurodegenerative conditions, and also to understand the causes of disease. am hopeful that future research advances may result in ways to improve the health of people suffering from neurodegeneration.

What is your take on claims made that certain probiotics or gut cleaning solutions can help people with Parkinson’s disease?

The knowledge just isn’t there to know what approach will be effective, there is no science behind most commercially available products. We understand so little about the biology of disease, let alone its connection to the microbiome, that anyone who tells you that they have evidence suggesting that they can target the microbiome to help treat any neurodegenerative condition, is guesswork at best.

However, probiotics that are sold commercially are generally safe, so there isn’t much harm being done. But long-term these approaches may not be viable and we need more evidence-based probiotics to validate the link between the microbiome and neurodegeneration.

This is not a surprise, but the discussion up to this point has largely been on the cost of the Hep C cures...

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Therapies also appear to reduce liver-related mortality.

Since use of direct acting antiviral combination therapies for hepatitis C virus (HCV) infection became widespread, the need for liver transplantation for patients with the infection has plummeted, researchers reported here.

In 2007, HCV infection was listed as the reason for 23.87% of all liver transplants in Europe, and that remained constant through 2014 when the impact of direct acting antiviral medications began to hit, said Chiara Mazzarelli, MD, of A.O. Ospedale Niguarda Ca'Granda, Milan, Italy.

After that, the proportion dropped sharply each year, to the point that in 2017 about 10.6% of transplants were performed for HCV (P<0.0001).

"In contrast, the demand for livers for patients with NASH (nonalcoholic steatohepatitis) is increasing," Mazzarelli said in her late-breaker presentation at the International Liver Conference, sponsored by the European Association for the Study of the Liver. Liver transplantation for alcohol-related cirrhosis and for hepatitis B infection has remained consistent across the 11-year study period, she said.

She indicated that the reduction in transplantation observed among European patients would likely be similar in the United States and North America.

"In Europe the percentage of liver transplantations performed because of hepatitis C virus infection is rapidly declining," Mazzarelli said at a press conference. "This trend is expected to continue with the increasing access to direct acting antiviral therapy. For the first time after many years, survival of hepatitis C virus transplant recipients is improving thanks to the advent of direct acting antivirals."

"This important study does put into perspective the impact of treatment and shows that treatment can result in really relevant outcomes," said press conference moderator Markus Cornberg, MD, of Hannover Medical School in Germany.

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For many years, long-term care (LTC) policy makers have tended to fall into two warring camps: those favoring expanded social insurance, and those wanting tighter Medicaid eligibility criteria to incentivize people to plan for and buy LTC insurance. Both sides have warned of looming financial catastrophe as the Baby Boomers move into retirement and more than double the population needing care. Disagreement has resulted in a policy stalemate. 

The vanguard of the Boomer generation is less than 10 years away from beginning to drive up demand for LTC, and the country is unprepared to pay for it. It’s time that the policymakers stepped out of the old trenches. The war they’ve been fighting is largely obsolete.

Both progressives who supported the Community Living Assistance Services and Supports (CLASS) Act (a federal LTC insurance program quickly repealed after passage due to its financial instability), and those more inclined to market-based solutions tend to share a middle-to-upper-middle class perspective that has not been sensitive to major shifts in the economic strata below them. Many assume there is a stable American middle class that could either be sufficiently taxed to expand government programs or incentivized to pre-finance LTC of a variety and a quality level above a typical nursing home—which is what is now universally available to Americans through Medicaid after exhausting virtually all their assets. 

Two developments now challenge this orthodoxy. The most obvious is the collapse of the market for LTC insurance, which Conservatives held out as the alternative for middle class reliance on Medicaid. More important, but until recently less understood, is the phenomenon economist Joseph Stiglitz calls the “hollowing out” of the American middle class. A growing body of research reveals trends including a long period of wage stagnation; significantly less likelihood of earning as much as one’s parents; and diminishing lifetime earnings for cohorts entering the workforce since the late 1960s.

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The link between head injuries and dementia has just grown stronger: A new study of 2.8 million people in Denmark, including those who had and had not experienced a traumatic brain injury (TBI) in their lifetime, found that those with at least one TBI had a 24 percent increased risk of dementia, on average. The average diagnosis age was 81.

The NHS emphasize that this is about increased risk after receiving a TBI, however. The absolute risk of developing dementia throughout your lifetime is very small. Of this sample, only 5.1 percent of those that had a TBI developed dementia, compared to 4.5 percent of non-TBI people that also developed dementia.

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Exposure to smoke from wildfires was associated with a large increase in California emergency department (ED) visits for heart disease and stroke during the 2015 wildfire season, a review of more than 1 million ED visits in affected regions found.

During dense smoke days, a 42% increase in ED visits for heart attack and a 22% increase in visits for ischemic heart disease were found among individuals ages 65 and older, reported Ana G. Rappold, PhD, of the Environmental Protection Agency (EPA) in Durham, N.C., and colleagues.

Wildfire smoke exposure is an established risk factor for respiratory illnesses such as chronic obstructive pulmonary disease (COPD) and asthma, but the impact of breathing particulate air pollution from wildfire smoke on the risk for cardiovascular events -- such as ischemic stroke, heart failure and myocardial infarction (MI) -- is less well characterized.

"It is very common to see people in emergency rooms with COPD exacerbations or other respiratory problems around the time of wildfires, but stroke and MI are relatively uncommon," co-author Zachary S. Wettstein, BA, of the University of California, San Francisco, told MedPage Today. "You need a very large number of emergency room visits to study this."

The increase in hospital ED visits for stroke, heart attack and other cardiovascular causes was most pronounced in elderly people.

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Beginning April 2018, the Centers for Medicare and Medicaid Services will be sending new Medicare cards to beneficiaries. The new cards are being sent to decrease Medicare beneficiaries’ vulnerability to identity theft by removing the Social Security-based number from their Medicare identification cards and replacing it with a new unique Medicare Number.

Here’s what you need to know before they arrive.

1. Medicare cards will be sent between April 2018 and April 2019. Make sure your address is up to date because Medicare will be sending it to the location associated with your Social Security account. To update your address information contact Social Security at 1-800-772-1213 or go online.
2. Your new card will no longer include your Social Security number. It will include your name, new Medicare number, and the dates your Medicare Part A and Part B coverage started.
3. Start using your new Medicare card once you receive it. Destroy the old one immediately, since it contains your Social Security number. If you happen to lose or misplace your card you can get a replacement, but you can also can access your new Medicare number on a Medicare Summary Notice or through Medicare.
4. Keep your Medicare Advantage, Part D prescription, and/or Medigap. Continue using your health or drug plan’s card when you get health care or fill a prescription, but know you will also get the new Original Medicare card.
5. The Railroad Retirement Board will issue new cards to Railroad Retirement beneficiaries.

These are just a few quick tips to keep in mind as new Medicare cards are issued. You can find additional information on the release of Medicare’s new card on Medicare.gov.

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Kendra Colburn spent a decade uninsured. During those years, she worked as a carpenter near her hometown in rural Vermont, earning just enough that she didn't qualify for low-income health care, but not enough to afford health insurance on her own. While uninsured, she suffered two major work injuries that landed her in the emergency room -- once, a nail shot through three of her fingers, and another time, a piece of wood kicked back on the table saw and sliced her arm. When she was unable to pay the emergency room costs, her credit took a hit for years.

Today, Colburn works on her brother's farm and is covered by Medicaid. As a manual laborer, Colburn has developed nerve damage, which flares up in her hands and wrists with overuse. "I cut back my hours to deal with it. I can't afford to not be able to use my hands," she says. "That's how I make all of my money."

As a child who grew up in a farming community, Colburn says she observed that pain is just a part of being a farmer. "It's taken for granted that your body hurts every day, that your back always hurts." That's true for workers employed in some of the most dangerous jobs: Many manual laborers with high rates of injury and repetitive stress injuries are also more likely to be uninsured. In fact, a 2015 study found that 65 percent of commercial farmers identified health insurance costs as the most serious threat to their farms.

Alana Knudson, co-director of the Walsh Center for Rural Health at NORC at the University of Chicago, prefers to discuss rural health care in terms of strengths, but she does recognize the real barriers demonstrated by statistics. "Overall, we know that people who live in rural communities are likely to have lower incomes than their urban counterparts," she says. Rural residents are also more likely to have multiple chronic conditions and lower educational attainment, and they're more likely to face barriers in accessing transportation to medical care.

But there are also less tangible barriers. Colburn says that many people she knows don't feel comfortable navigating the complicated web of professional medical interventions when experiencing health issues. And the Medicaid system can often lack efficiency. Colburn says her state's website often doesn't work, and she still hasn't figured out how to find a primary care doctor who takes her insurance. Once, a computer glitch resulted in her being removed from her insurance plan, and she was charged hundreds of dollars in out-of-pocket expenses. Even though it was an error on Medicaid's part, Colburn was still responsible for the bill. "Generally when we're talking about rural health care issues, we're talking about access, as if once you get access that actually means something. But when you get access, it still can be a nightmare," she says.

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How often should a man get breast and cervical cancer screenings? Should a woman get screened for prostate cancer? The answer to these questions and more depends on knowing if your patient is transgender.

The Williams Institute at the University of California Los Angeles estimated the transgender population in the U.S. to be 1.4 million in 2016. A recent study in Minnesota of 9th and 11th graders found nearly 3% of students identify as transgender or gender non-conforming.

When it comes to healthcare, are we ready to meet these patients' needs? Several cases where a transgender or gender-expansive person was not properly identified, or their provider simply was not aware of issues regarding transgender individuals, have been in the news lately.

My county hospital is rolling out changes to our health information management system (HIMS) to try to capture this complete information on all of our patients, including transgender and gender-expansive patients. These questions are called SOGIE, which stands for Sexual Orientation, Gender Identity, and Expression. At intake, we ask:

• What is the sex listed on your original birth certificate?
• What is your gender identity?
• What is your sexual orientation?

Our initial goal is to capture 10% of our patient population with rolling increases as we move forward. In the hopes of meeting all of our patients' needs, we will ask these questions just one time over the patient's lifetime. However, the patient can initiate changes at any time in the future.

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Jaimi Lard, who is deafblind, offered actionable advice for treating patients with different disabilities.

Going to the dentist can be an unpleasant experience for anyone, but for people who are deafblind, these discomforts are worsened when dentists are unsure how to act around patients with disabilities.

It doesn’t have to be this way, according to Jaimi Lard, Perkins School for the Blind’s diversity and inclusion speaker. In fact, there are a number of simple steps dentists everywhere can take to make their practices more accommodating to people who can’t see or hear what’s happening in the dental chair.

Last week, Lard, who was born deaf and with severely limited vision, visited Tufts University School of Dental Medicine to share healthcare tips with more than 60 students and faculty members.

“We want to help bring you to a new comfort level,” Lard told the audience, using tactile sign language to communicate her message through her interpreter, Christine Dwyer. “We’re here to help you help others.”

Throughout her talk, Lard regaled the audience with personal stories, touched on important healthcare provisions within the Americans with Disabilities Act and taught students relevant signs to use in their careers, like the sign for “water” and “dentist.”

She also outlined a set of specific actions dentists can take to adapt to the needs of patients who are deafblind. “EASE,” which stands for “explain, ask, show, execute,” is a simple step-by-step guide to help dentists better treat patients who have sensory loss and use interpreters, said Lard.

“Explain what you’re going to do, ask if they need clarification and then show them. Let them touch the equipment, that’s how they’re going to see it,” said Lard. Next “Allow the interpreter time to give that information. Make sure that everything is clear. And then execute.”

Following the steps may take a bit more time, but it will yield a better experience for both patient and doctor, she said.

“Have patience with your patient, that’s the most important thing,” she reminded the audience.