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How does an illness effect you when another member of the family has a chronic or fatal illness ?

The Mighty offers a platform where you can share  your experiences with others.  The site contains stories of diseases from A-Z.

If you are looking for a village to share your story with others The Mighty is your village. It contains a variety of formats which are educational and even entertaining in light of the serious disorders discussed. The articles are vignettes written by family members and friends of those with these challenges.



from "Wrecking Ball"  by Miley Cyrus





Guidelines for Contributing Writers | The Mighty

Healthcare Stole the American Dream - Here’s How We Get it Back | Dave C...

Healthcare Stole the American Dream - Here’s How We Get it Back |  

 

TEDx Talk

Thanks to Rob Lambert M.D. a pioneer in direct primary care for 

bringing this to my attention.

The middle class is being crushed by skyrocketing healthcare costs, but there are common sense solutions to save it. Dave Chase gives us a non-political road map to solving one of America's biggest problems.

Dave Chase is co-founder of the Health Rosetta and was named one of the most influential people in Digital Health due to his entrepreneurial success, public speaking & writing that recognizes healthcare’s under-performance but contrasts that with a growing cadre of high-performing organizations that have solved healthcare’s toughest challenges. Chase, widely published, co-authored the healthcare Book of the Year in in 2014. Chase was the CEO & Co-founder of Avado, which was acquired by and integrated into WebMD and the most widely used healthcare professional site – Medscape. Before Avado, Chase spent several years outside of healthcare in startups as founder or consulting roles with LiveRez.com, MarketLeader, & WhatCounts. He also played founding & leadership roles in launching two new $1B+ businesses within Microsoft including their $2 billion healthcare platform business. Chase is a father of two great kids/athletes, husband & oxygen-fueled mountain athlete.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

Bay Area Cancer Patient Confronts and Embraces His Right to Die | State of Health | KQED News

Something all patients should know if you live in California and five other states, Oregon,  District of Columbia,Vermont, Washington and California. It is an option in Montana, requiring a terminal illness and a prognosis of less than six months to live.


Many other jurisdictions have similar bills in process.

Other Facts:
The specific method in each state varies, but mainly involves a prescription from a licensed physician approved by the state in which the patient is a resident.

Physician-assisted suicide differs from euthanasia, which is defined as the act of assisting people with their death in order to end their suffering, but without the backing of a controlling legal authority.

In Oregon, "the physician must be a Doctor of Medicine (M.D.) or Doctor of Osteopathy (D.O.) licensed to practice medicine by the Board of Medical Examiners for the State of Oregon. The physician must also be willing to participate in the Act."

In Vermont, "only a doctor of medicine or osteopathy licensed to practice medicine in Washington may write this prescription...A physician, nurse, pharmacist, or other person shall not be under any duty, by law or contract, to participate in the provision of a lethal dose of medication to a patient."

In Washington, "only a doctor of medicine or osteopathy licensed to practice medicine in Washington may write this prescription...participation is entirely voluntary. Health care providers are not required to provide prescriptions or medications to qualified patients."

In California, "An individual seeking to obtain a prescription for an aid-in-dying drug...shall submit two oral requests, a minimum of 15 days apart, and a written request to his or her attending physician. The attending physician shall directly, and not through a designee, receive all three requests required pursuant to this section."

Statistics:

The process of reporting applications and deaths varies by state. Only those states where physician-assisted suicide is mandated by law have a reporting process.

Oregon - Has had a physician-assisted suicide law on the books since 1997. Since its enactment, there has been a steady increase in both prescription recipients and the number of deaths. According to the 2015 Data Summary, as of January 27, 2016, prescriptions have been written for 1,545 people, and 991 patients have died from ingesting the drugs that were legally prescribed to them under the law.

Washington - According to the 2014 annual report, since 2009 prescriptions have been written for 725 people, and there have been 712 reported deaths.

Vermont - Between May 2013 and May 2016, physician reporting forms have been completed for 24 people, according to the Department of Health.

Bay Area Cancer Patient Confronts and Embraces His Right to Die | State of Health | KQED News

Best preventive care? Get vaccines, and don't smoke -

Doctors giving regular checkups will get the most bang for their buck if they advise adults to quit smoking, convince teens to never start, and keep children up to date with immunizations, according to an influential report released Monday by the Bloomington-based HealthPartners Institute.

The research findings, sponsored in part by the U.S. Centers for Disease Control and Prevention, could influence how doctors across the country conduct thousands of regular patient visits each year.

Comparing 28 recommended preventive services, HealthPartne researchers   found that tobacco counseling and pediatric immunizations outranked the others in cost-effectiveness and the potential to save lives.

While all the preventive services are valuable, the reality is that doctors can't do them all in a standard 15-minute office visit, said Dr. George Isham, a senior fellow with the institute.

The study found a particularly strong impact if 90 percent of youth received tobacco prevention counseling — a huge increase from the 20 percent that actually receive it today. "Tobacco use has certainly come down over time, both among adults and youth," said Michael Maciosek, the study's lead author. "Nevertheless, it remains a huge problem compared to other health threats."

HealthPartners' first ranking of preventive services received wide notice when it came out in 2006 — at a time when rising deductibles and copays made patients more sensitive to medical bills and which services they were paying for out of pocket.

Today, preventive services are fully covered by insurers — a requirement of the 2010 Affordable Care Act. But pledges by President-elect Donald Trump and Republican lawmakers to repeal the act could make patients more sensitive to costs again.

"These are all valuable kinds of things, but this research tells us some things are more valuable than others," said Isham, who wrote an editorial that accompanied the research in the Annals of Family Medicine.

Even with preventive services fully covered, the report provides important information to doctors and to health plans in terms of the incentives they provide to doctors, Maciosek said, especially when doctors face time constraints.

Best preventive care? Get vaccines, and don't smoke - StarTribune.com

Congressional plan to repeal and replace the ACA is not clear

Amidst the chaos of electioneering and the run up to the Presidential inauguration, the U.S. Congress is drafting amendments to the affordable care act.  Will it be repeal and replace the Affordable Care Act,  or slice and dice?

Recent summary from the California Medical Association gives some overview of the possible process.

A budget resolution establishing procedural instructions to set up the repeal of the Affordable Care Act (ACA) was introduced in the U.S. Senate on Tuesday. This move by the Senate’s budget committee chairman on the first day of the new Congress has set into motion the GOP promise to repeal the ACA as its first legislative act. The House is expected to vote on the Senate budget resolution shortly after the Senate vote. However, the repeal process could take months, while developing a replacement plan could take years.

Senate Republicans have agreed to use a budget resolution, allowing them to repeal ACA funding without any Democratic votes. Budget resolutions require a simple majority to pass in the Senate, instead of the 60 votes required to clear procedural hurdles. There are 52 Republicans in the 100-seat chamber.

While the Senate budget resolution is a statement of priorities and lays the groundwork for the repeal of the ACA, it does not have the force of law. To repeal the law, the House Energy & Commerce and Ways & Means committees and the Senate Finance Committee need to meet to develop replacement legislation. The Senate plan introduced Tuesday includes a “repeal and replace” strategy that would require passage of two separate bills.

Looming over the whole process of repealing the ACA are the actions of the health care marketplace. Congressional plans to repeal the ACA without a replacement plan in place could result in more uncertainty in an already fragile marketplace, prompting insurers to leave the individual market and creating chaos for the 20 million Americans insured through the ACA.

In addition to working on a replacement plan, Congress must also act on a handful of health care programs before they expire, including the Children's Health Insurance Program; Prescription Drug User Fee Act; Medical Device User Fee and Modernization Act; and the Veterans' Access, Choice and Accountability Act.

The California Medical Association (CMA) is closely following these issues as they play out in Congress and will be actively engaged in shaping the future of health care reform at the national level. CMA will work to ensure that any resulting legislation will benefit the patients and physicians in California and the nation as a whole. We will also work to keep you up-to-date on any breaking news from the nation’s capital.

Below are the principles that will guide CMA’s advocacy on health care reform.

1. Ensure Californians do not lose coverage or access to care.
2. Protect the billions in current state and federal health care funding.
3. Ensure appropriate and broad-based financing.
4. Advocate for patient choice of physicians, health plans and coverage through private contracting, health savings accounts, health plans and state and federal government programs.
5. Continue tax policies and subsidies that help low-income patients afford coverage.
6. Maintain the insurance industry reforms that protect physicians and patients.

Contact: Elizabeth McNeil, (800) 786-4262 or emcneil@cmanet.org.

Keywords:

• ACA
 
• Affordable Care Act
 
• Affordable Care Act (ACA) Repeal
 
• Federal Legislation
 
• Federal Legislative Advocacy

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Precision Medicine has some Dangers: Gene Therapy To Prevent Inherited Diseases May Cause Other Ills

Unexpected Risks Found In Editing Genes To Prevent Inherited Disorders

The genes in mitochondria, which are the powerhouses in human cells, 

can cause fatal inherited disease. 

But replacing the bad genes may cause other health problems.

Uknown to many is the fact that DNA is present not only in the nuclei of cells, but also in the cell's power generation organelle, the mitochondria. 

There the mitochondria generates it's power generating ATP and also contains DNA and RNA.  The hidden risk is that during meiosis and later fertilization of the female egg, the new zygote contains cytoplasm from the mother as well as nuclear DNA. The male sperm contains little, if any cytoplasm. 

 Thus the female contributes cellular mitochondria (containing DNA) to the fertilization.  So the new oocyte contains not only nuclear DNA formed by meiosis it also contains cellular DNA from mother.  Therein lies a new risk factor.

Some genetic diseases are caused by mutations or defects in mitochondrial DNA. 

There are several neuro-muscular diseases caused by mitochondrial defects.

In September, reproductive endocrinologist John Zhang and his team at the New Hope Fertility Center in New York City captured the world's attention when they announced the birth of a child to a mother carrying a fatal genetic defect.

Using a technique called mitochondrial replacement therapy, the researchers combined DNA from two women and one man to bypass the defect and produce a healthy baby boy — one with, quite literally, three genetic parents.

It was heralded as a stunning technological leap for in vitro fertilization, albeit one that the team was forced to perform in Mexico, because the technique has not been approved in the United States.

But for all the accolades, the method also has scientists concerned that the fatally flawed mitochondria can resurface to threaten a child's health.

Earlier this month, a study published in Nature by Shoukhrat Mitalipov, head of the Center for Embryonic Cell and Gene Therapy at the Oregon Health and Science University in Portland, suggested that in roughly 15 percent of cases, the mitochondrial replacement could fail and allow fatal defects to return, or even increase a child's vulnerability to new ailments.

Earlier this month, a study published in Nature by Shoukhrat Mitalipov, head of the Center for Embryonic Cell and Gene Therapy at the Oregon Health and Science University in Portland, suggested that in roughly 15 percent of cases, the mitochondrial replacement could fail and allow fatal defects to return, or even increase a child's vulnerability to new ailments.

"This study shows the potential as well as the risks of gene therapy in the germline," Mitalipov says. This is especially true of mitochondria, because its genomes are so different than the genomes in the nucleus of cells. Slight variations between mitochondrial genomes, he adds, "turn out to matter a great deal."

Gene Therapy To Prevent Inherited Diseases May Cause Other Ills : Shots - Health News : NPR

'Patient satisfaction ratings may do more harm than good' | Business Standard News

Contrary to the popular perception, subjective patient satisfaction ratings may actually lead to lower-quality care in some situations, according to new research. 

"Increasingly used as a measure of physician performance, patient satisfaction data can be flawed and not broadly applicable," said Terence Myckatyn of Washington University School of Medicine in the US.

Patient satisfaction is now among the quality of care indicators used in "pay for performance" programmes tying financial reimbursement under Medicare and the Affordable Care Act.

However, using patient satisfaction ratings in this way is having some unintended consequences, the researchers said.

For example, some hospitals are upgrading their physical facilities and adding luxury amenities, in an attempt to improve patient satisfaction scores.

"One could argue that these costly expenses have more to do with the perception of health-care quality rather than actual outcomes," Myckatyn said.

There are even anecdotal reports of doctors altering their medical judgement to improve patient satisfaction and minimise negative reviews - for example, prescribing antibiotics or strong pain medications to keep patients happy and move them quickly through the system.

"Behaviour motivated by patient satisfaction becomes especially dangerous when ratings are directly tied to compensation," researchers said.

This objective appraisal and reporting from an outside source may fall on deaf ears among the 'authorities' who set meaningless metric for measuring quality of care.  I know many patients who are being treated appropriately and who give their provider and/or hospital failing grades.

On the other hand we see more private rooms and more attention to non medical needs which contribute to a better sense of wellness which overall increases quality of life.

"The truth is that there is little high-level evidence to support that patient satisfaction surveys will provide Americans with improved medical outcomes, but there are plenty of contradictory data," said Myckatyn.

The research was published in the journal Plastic and Reconstructive Surgery.

(This story has not been edited by Business Standard staff and is auto-generated from a syndicated feed.)

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'Patient satisfaction ratings may do more harm than good' | Business Standard

The Most Exciting Medical Technologies of 2017 - The Medical Futurist

2016 proved to be an exciting year for providers as well as patients.

2016 was a rich year for medical technology. Virtual Reality. Augmented Reality. Smart algorithms analysing wearable data. Amazing technologies arrived in our lives and on the market almost every day. And it will not stop in the coming year.

The top technologies with the biggest promise for 2017

1) A new era in diabetes care

2) Precision medicine in oncology

3) Narrow artificial intelligence in US clinics

4) Driverless trucks or cars will include health sensors

5) New service in nutrigenomics

6) SpaceX and NASA will realize they need a digital health masterplan to reach Mars

7) The genome editing method CRISPR in clinical trials

8) A big tech company will step into health

9) An insurance company launches a wearable sensor package

10) The surgical robot by Google and Johnson&Johnson will compete with daVinci

11) Vocal biomarkers: the future of diagnostic medicine

12) Pharma will start using massive AI in clinical trials and drug research

13) A company will make the 3D printed cast a real choice

These are all some amazing predictions.  Whether they prove to be successful or not will depend upon market demand, health care financing, and government approval. These medical technologies are in early development and implementation may be five years or more.

Don't plan on seeing these on your CVS or Rite Aid shelf soon.

The Most Exciting Medical Technologies of 2017 - The Medical Futurist