When Medicine Is A Business, Rare Disease Patients Suffer

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In the United States, a rare disease is a condition that affects fewer than 200,000 people, a definition that Congress coined when it passed the Orphan Drug Act of 1983 to establish which conditions would qualify for incentive programs. In our profit-driven medical industrial complex, drug companies refused to “adopt” rare diseases or develop treatments for them due to lack of financial incentive, which the Act aimed to fix.

It’d be nice if receiving a rare disease diagnosis (and subsequently treating it) was as simple and exciting as an episode of “House” or “Grey’s Anatomy,” but the reality is far from that fiction. This is especially true when you’re dealing with a disease that manifests itself by wreaking pain on the human body, something that is nearly impossible to test or measure. Plus, approximately 70 percent of those impacted by chronic pain are women, and our flawed medical system is ripe with inherent bias and sexism run rampant.

The number of Americans living with a rare disease is estimated between 25 and 30 million. The combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. For this reason (and because I’ve met so many people affected by this disease), I frequently joke that EDS is one of the least rare rare diseases in existence. We have a vibrant online community, but most medical professionals are completely unaware of what EDS is and how it affects the body.

For the average medical patient, a diagnosis is the first step in the final stretch of their marathon. A diagnosis means the assignment of a fully functional care team spread across multiple specialties, with everyone focused on a particular treatment plan (and potentially a solution). For many rare disease patients, on the other hand, a diagnosis is a confirmation and a validation but often has no established treatment plan, fix or cure.

Why? Because the hunt for a cure requires research, and rare disease research is often stymied by the need to obtain funding. Rare diseases end up caught in an ouroboros. Major federal funding agencies give preference to compelling research that’s most likely to have a direct impact on patients, and research focused on hypermobile EDS, in particular, remains largely exploratory. Researchers are still trying to pin down the genetic link that causes the disease, and it can’t be fixed if we don’t know why it happens. 

Senior advocates say new draft guide to Medicare distorts facts. Here’s what you need to know

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Medicare & You is the government’s seminal guide to all things Medicare, and is a primary resource used by consumers in each year’s annual enrollment season beginning Oct. 15. As such, it is or should be the gold standard of reliable information for more than 65 million people already enrolled in Medicare and the millions of people who newly enroll each year.

According to three leading senior advocacy groups, however, the 2019 draft version of Medicare & You has unfairly tilted the playing field. After reviewing the draft, the three groups – the Center for Medicare Advocacy, Justice in Aging, and the Medicare Rights Center – said it contained false statements that appear designed to convince people that private Medicare Advantage (MA) insurance plans are superior to original Medicare.

“Medicare & You is the core Medicare communication to beneficiaries,” the groups said in a joint letter to Seema Verma, head of the Centers for Medicare & Medicaid Services (CMS). “It is critical that the information in the Handbook be fairly and accurately presented. Beneficiaries making important choices about their coverage need to be able to rely on the Handbook for unbiased information that they can trust. However, when comparing Original Medicare and Medicare Advantage, the 2019 draft Handbook does not meet this standard, distorting and mischaracterizing the facts in serious ways.”

The Medicare Rights Center released a copy of the draft 2019 Medicare & You handbook along with detailed examples of what it saw as improper comparisons between MA plans and original Medicare.

In several comparative discussions of the two approaches to Medicare, CMS downplays the possible shortcomings of getting care from a limited network of health providers in an MA plan, which involve not only a limited number of providers but also geographic limitations of where a plan provides coverage. At the same time, the draft handbook fails to emphasize that users of original Medicare can use any Medicare-licensed providers anywhere in the nation.

The bottom line

The handbook also creates the impression that MA plans are less costly to seniors than original Medicare. This may or may not be true; it depends on the types of coverage selected and a beneficiary’s individual medical needs.

The LIVE ON Movement: DISABILITY PRIDE. DISABILITY AWARENESS.

http://liveon.net/

Megan talks from the Breaking Silences conference about how she understands why people struggle to Live On. 

Dynah is a lawyer who uses a wheelchair because she has the progressive neuromuscular disability Friedreich’s ataxia .

Frankie talks about his life since his motorcycle accident. Despite being told his SCI (spinal cord injury) might affect his ability to do things and have children, he has a little girl and a lifetime of amazing experiences to share.

Joe, a disabled male-identifying individual who is a little person and has a spinal cord injury, discusses living with a disability, the struggle with dating, and having confidence, as well as how joining the disability rights movement was empowering to his identity as a disabled man.

Aimee S. has a nice post on the site as well...

Outsiders Swoop In Vowing To Rescue Rural Hospitals Short On Hope — And Money

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In worn blue jeans and an untucked shirt, the bearded entrepreneur from Denver pledged at this town hall meeting in March to revive the Surprise Valley Community Hospital — a place many in the audience counted on to set their broken bones, stitch up cattle-tagging cuts and tend to aging loved ones.

Gertz said that if they voted this week to let him buy their tiny public hospital, he would retain such vital services. Better still, he said, he’d like to open a “wellness center” to attract well-heeled outsiders — one that would offer telehealth, addiction treatment, physical therapy, genetic testing, intravenous vitamin infusions, even massage. Cedarville’s failing hospital, now at least $4 million in debt, would not just bounce back but thrive, he said.

Gertz, 34, a former weightlifter who runs clinical-lab and nutraceutical companies, unveiled his plan to pay for it: He’d use the 26-bed hospital to bill insurers for lab tests regardless of where patients lived. Through telemedicine technology, doctors working for Surprise Valley could order tests for people who’d never set foot there.

To some of the 100 or so people at the meeting that night, Gertz’s plan offered hope. To others, it sounded suspiciously familiar: Just months before, another out-of-towner had proposed a similar deal — only to disappear.

Outsiders “come in and promise the moon,” said Jeanne Goldman, 72, a retired businesswoman. “The [hospital’s] board is just so desperate with all the debt, and they pray this angel’s going to come along and fix it. If this was a shoe store in Surprise Valley, I could care less, but it’s a hospital.”

Michigan bill forces Medicaid recipients to work 80 hours per month

https://on.freep.com/2sUeHcm

A bill requiring many Medicaid recipients to work at least 80 hours a month is headed to Gov. Rick Snyder after the Senate gave final passage to the bill Thursday.

And Snyder said he's ready to sign the bill.

“Healthy Michigan has been integral to improving the health of Michiganders. The program has saved lives, improved lifestyles and reduced overall costs for the entire health care system as well as for taxpayers," he said in a statement. "I appreciate the strong working relationship with my legislative partners that led to this framework, which ensures the continuation and sustainability of the Healthy Michigan program."

The bill is not necessarily about saving money for the state, said Sen. Mike Shirkey, R-Clarklake, the sponsor of the bill.

"This is all about finding more workers," he said. "Every business owner I know is searching for workers from the entire spectrum of jobs from the entry level to the high skilled jobs and the richest source of that for us are the able-bodied folks that are covered under Healthy Michigan."