Monday, April 20, 2015

Is There A Doctor In The White House?

Sit down, the White House has lost its mind. First, watch the video of Obama speaking here on public health issues arising from "climate change."

http://youtu.be/M16-YepUY1A

Mr. President, your campaign that asthma is caused by climate change is, pardon my French, HOCKUM. Please do everyone who suffers from asthma a favor and tell the truth. That's all. As in what's on your own National Instutites of Health, where it says:
"The exact cause of asthma isn't known. Researchers think some genetic and environmental factors interact to cause asthma, most often early in life. These factors include:

  • An inherited tendency to develop allergies, called atopy (AT-o-pe)
  • Parents who have asthma
  • Certain respiratory infections during childhood
  • Contact with some airborne allergens or exposure to some viral infections in infancy or in early childhood when the immune system is developing
  • If asthma or atopy runs in your family, exposure to irritants (for example, tobacco smoke) may make your airways more reactive to substances in the air.

Some factors may be more likely to cause asthma in some people than in others. Researchers continue to explore what causes asthma.*

*National Institutes of Health, Causes of Asthma, sourced April 20, 2015

No, asthma is not a "preventable" disease, as you can't prevent something when you don't know how it starts! Asthma is a disease that HOPEFULLY can be managed, but no one is given that promise. DO NOT BLAME THE VICTIM FOR THE SAKE OF YOUR PR. I refuse to crawl up on that cross for you. Quit LYING to the public for your political ends, and shame on you for putting us on your so-called "climate change" propaganda posters.

Sincerely,
Asthmatic folowing a case of Antibiotic-Resistant Pertussis,
Pamela Curtis
Westminster, Colorado

Sunday, April 19, 2015

Falling With Grace: Sweet Memory

I rarely reblog, but Falling With Grace: Sweet Memory touched my soul today: "Have you ever had your mind wander and whisk your spirit back to a beautiful space in time? I just had the sweetest memory of my grandmother..."

It tells the story of Amy's grandmother's kindness helping her grandchild with Amy's first baby. And it tells of her grandmother's anxiety around doctor visits. And though Grace does not outright say it, there is a great gift that comes from our suffering, and that is it gives us ability to understand the suffering of others and respect their frailties.

There's not one of use who is whole. The world is a sloppy place. Our bodies are sloppy. It is our minds that allow us to understand good order, and it's a constant struggle to maintain. But we can be grateful any of it works at all! The world is full of wonders, and we get to experience many of them, good and bad.

But most of all, we can be there for one another, in kindness and charity, and create beautiful memories that last a lifetime and beyond.


Friday, April 17, 2015

NPR Doesn't Understand Columbia's Letter Re: Dr. Oz

@NPR, shame on you for promoting anti-free-speech talk. Just as Dr. Oz is allowed to say untrue things on his TV show so long as he doesn't do malpractice, is what the letter from Columbia University is saying. When the audience makes the mistake that they somehow think they're one of his patience when he sells them snake old is the fault of the viewer, not Dr. Oz, nor Columbia University. When was the last time anyone said, "I saw it on TV!" and took it for Gospel? Anyone knows the person who says that is a chold or a fool, or both. I'll tell you what the law says: Caveat Emptor. The buyer should beware.

The Realities of Working While Disabled

If the #POTUS really wants more #peoplewdisabilities to #work, he should understand we already have more high school and college diplomas than our healthy counterparts. It’s not just as easy as providing #accommodations. We already get that under current laws. What we need are JOBS, just like our healthy counterparts, and LESS RED TAPE for those who can never, ever hope to get more healthy than they are today.

You can find out the real disability story in this contry today in the introduction to my new ebook, Chin Up! 50 Ways to Make Money While Disabled, available through Amazon.com.

Please, Mr. President, if you really mean to help us, look at the logjam in government rather than to the speck in the eye of the disabled....

Tuesday, April 7, 2015

The Realities of Patient Engagement

It's pretty simple: If you want people to be engaged in a process, make that process engaging. However, too often doctors believe that just because they have the right answers, that alone should be enough to make patients follow their instructions. This attitude was highlighted in a recent interview with Joseph Kvedar, MD head of the Center for Connected Care, regarding the creation of MHealth, a new patient app that won a $468,000 grant from the Robert Wood John Foundation.
"RWJF is giving Boston-based Partners $468,000 to develop an "engagement engine" that convinces consumers to not only use health and activity trackers, but to keep on using them long after the novelty has worn off1."

When asked about his "biggest fear" with respect to the development of MHealth, Dr. Kvedar said:
"I hope that developers don't assume that what works in the consumer industries can just be applied to mobile health. In healthcare, we can't just "give people what they want." The challenge in healthcare is that, though we know what patients/consumers need to do to improve their health, most of them don’t want to hear about it2."

This sentiment, to me, is an extreme oversimplification of the problem of patient adherence. First, saying "most [patients] don't want to hear about what they need to do to stay healthy" is just bunk. All you have to do is look at the popularity of patient-lead websites and physician-lead websites and TV shows is enough to discredit the idea of "patient non-engagement." Also indicative of patient engagement is doctor appointment attendance rates:
Over 80% of US adults see their doctor at least once a year – the national average is 3 visits/year – double that for patients with a chronic condition. Now what is it about these statistics that “screams” unengaged? Why would so many people who are so “unengaged” spend so much time making and waiting for an appointment to do something they care so little about? They wouldn’t!3

And yet, physicians still encounter significant patient non-adherence.
Medication non-adherence is most simply defined as the number of doses not taken or taken incorrectly that jeopardizes the patient's therapeutic outcome4. NCPIE5 has noted that non-adherence can take a variety of forms, including not having a prescription filled, taking an incorrect dose, taking a medication at the wrong time, forgetting to take doses, or stopping therapy too soon. ...Medication non-adherence is a major public health problem that has been called an "invisible epidemic."6, 7 Non-adherence to pharmacotherapy has been reported to range from 13% to 93%, with an average rate of 40%8. The problem encompasses all ages and ethnic groups. It has been estimated that 43% of the general population, 55% of the elderly, and 54% of children and teenagers are non-adherent9. A host of individual characteristics also influence adherence, such as the patient's religion, health beliefs, social support system, and ethnicity.

So how can these things both be true? How can patients both be engaged with their health and be non-adherent towards plans that will improve their health? Why do doctors experience an average rate of 40% non-adherence across all ages and ethnic groups?

The answer is really quite simple: professionals don't consider patients' input. Just look at what the problem is called: "patient non-adherence." It's not called "doctor miscommunication" nor even "doctor-patient disconnect." No, the fault is placed entirely on patients, as there is (in doctors' minds) no legitimate reasons for patients to not follow given health directions. There is only one right answer: what the doctor recommends. And you're not supposed to "take it or leave it." Patients are just supposed to "take it," regardless of the instructions. If the therapy is too demanding, has too many side effects, is too expensive, or is too scary, that's the patients' problem.

In an environment such as this, when a doctor asks, "Did you do what you were supposed to do?" the only answer is "Yes," regardless of whether or not that is actually true. Answering "No," while honest, is only rife with unwanted repercussions. When given no way to option-out of a doctor's decision, of course patients will say they're complying while behaving otherwise in private. What other option do they have?

Doctors and health technicians need to consider that they're already working at a disadvantage, and that it is their responsibility, as the professionals, to meet patients half-way. "The beatings will continue until morale improves...", is not a model for compliance. Rather, professionals need to realize the fundamental truth that when decisions are very important and highly complex, it is easier to remain inactive than it is to take actions. This irrational behavior towards compliance is true for patients as well as doctors! A study by Redlemeier and Shafir showed that "the difficulty in deciding between... two medications led some physicians to recommend [neither]10." This shows that situations involving choice (and specifically whether or not to prescribe/take a medication) can paradoxically influence people to choose the status quo, even among physicians.

When prescribing a new medication, the average primary care physician spends less than 50 seconds teaching (too strong a word) patients about the medication, e.g. why they need it, how to take it, how much to take, when to take it, indications and contraindications, when to stop and what to do when you stop. That’s not much time for the physician to say everything that needs to be said (which doesn’t happen). Nor does it leave time for the patient to say much. Since most patients are reluctant to interrupt or contradict their clinician, many if not most of the concerns patients have about taking the new medications are never voiced. Rather, patients just go home and never fill the prescript11.

If we want to address this problem, and more to the point, if we want patients to remain engaged with a health app and as a result, become more compliant, patients' concerns must be addressed. It is obviously simply not enough to just instruct. There must be the opportunity for dialogue and understanding on the part of physicians that this is not just a patient problem. Disagreement on the part of the patient should not be seen a challenge to the doctor's authority, rather, if compliance is the goal, doctors should invite patients to raise concerns. Even better would be for doctors to ask direct questions addressing the main reasons cited in the literature for non-compliance12, namely:
Do you agree with the diagnosis necessitating the prescription?
Do you agree the diagnosis is serious enough to merit the doctor's suggested treatment?
Do you believe in the treatment (i.e., believe in taking medication, believe in physical therapy, etc.)?
Can you afford the doctor's recommendations?
Do you believe the benefits of the recommendations outweigh the risks associated with it?
Do you believe the recommendations will work?

And if we want to maintain patient compliance with an app "long after the novelty has worn off," we must look at the reasons for non-compliance at that juncture, and successful practices that keep patients engaged. Thankfully, this is a well-explored subject, and one such health app is already in existence: SuperBetter. SuperBetter is a tool created by game designers and backed by science13, designed to help build personal resilience. That is, the ability to stay strong, motivated and optimistic even in the face of difficult challenges. In other words, higher long-term patient compliance.

We can only hope Dr. Kvedar likes video games.


References
[1] Wicklund E. Partners looks to make patient engagement persistent. mHealthNews; March 24, 2015 Available at: www.mhealthnews.com/news/partners-looks-make-patient-engagement-persistent. Accessed April 7, 2015.

[2] Wicklund E. Joe Kvedar's quest to personalize health. mHealth; October 17, 2014 Available at: www.mhealthnews.com/news/mhealth-masters-joe-kvedars-quest-personalize-health. Accessed April 7, 2015.

[3] Wilkins S. Is trying to convince people to use health apps they don't want the right approach to patient engagement? Mind the Gap; October 24, 2014 Available at: Is trying to convinve people to use health apps they don't want the right approach to patient engagement? Accessed April 7, 2015.

[4] Smith DL. Patient Compliance: An Educational Mandate. McLean, Va: Norwich Eaton Pharmaceuticals, Inc. and Consumer Health Information Corp; 1989.

[5] National Council on Patient Information and Education (NCPIE). The Other Drug Problem: Statistics on Medicine Use and Compliance. Bethesda, Md; 1997 Available at: www.talkaboutrx.org/compliance.html#problem. Accessed May 8, 2000.

[6] Smith MC. Predicting and detecting noncompliance. In: Smith MC, Wertheimer AI, eds. Social and Behavioral Aspects of Pharmaceutical Care. New York, NY: Pharmaceutical Products Press, Inc; 1996.

[7] Fincham JE, Wertheimer AI. Using the health belief model to predict initial drug therapy defaulting. Soc Sci Med. 1985;20(1):101-5.

[8] Bond WS, Hussar DA. Detection methods and strategies for improving medication compliance. Am J Hosp Pharm. 1991;48:1978-88.

[9] Gladman J. Pharmacists paid to improve drug compliance, persistency. Payment Strategies Pharm Care. 1997; October:4-8.

[10] Redelmeier D., MD and Shafir E., PhD. Medical Decision Making in Situations that Offer Multiple Alternatives. JAMA. 1995;273:302-305.

[11] Wilkins S. Patient Non-Adherence (Like Engagement) Is a Physician-Patient Communication Challenge – Not a Health Information Technology Challenge. Mind the Gap; July 23, 2013 Available at: www.cfah.org/blog/2013/patient-non-adherence-like-engagement-is-a-physician-patient-communication-challenge-not-a-health-information-technology-challenge. Accessed April 7, 2015.

[12] Zolnierek, H. et al. Physician Communication and Patient Adherence to Treatment: A Meta-Analysis. Medical Care. 2009;47(8):826-834.

[13] McGonigal J. The science behind SuperBetter. www.superbetter.com. Accessed April 7, 2015.

Tuesday, March 10, 2015

The eBook is Published!!

Available through Amazon!


Chin up! 50 Ways to Make Money While Disabled
Too often with government disability benefits there are poverty traps. That is, in order to get the care we need to live, we must give up the income that allows us to survive. This creates situations where people are forced to be dependent on welfare, stuck forever at the bottom of society.

But what if there was a way to work and keep your benefits without stealing or defrauding the government? There is, and in the first section, this book explains how. You don't have to be limited to the meager income the SGA allows. Learn how to match your living expenses with special government allowances and keep both your income and more of your cash benefits.

The majority of this book covers fifty different occupations well suited to people of different disability types. Learn how to start your own home business, independent contracting service, or online store. Discover how to work within the demands of your disability and still satisfy your customers. Find ways to present your professional experience in your resume or curriculum vitae that best showcase your skills. And follow simple exercises to discover where your passions and best opportunities for success lie.

Each job is tagged to fit in any of six categories: Artistic, Craft, Professional, Technical, Skilled and Unskilled Labor.

Monday, February 2, 2015

SSDI due to Bankrupt in 2016 - 20% Reduction in Benefits Forecast

If you receive disability benefits, PAY ATTENTION: a new House rule introduced this year will cause millions to see a 20% reduction in their benefit payments. Lest you think this is something people on disability can affort, let me remind you that disibility benefits in the U.S. are not enough to keep recepients above the poverty line, so a sudden 20% reduction is only going to make people already poor an unable to provide for themselves that much worse off. It is unconscionable: Social Security is not a welfare program, it is something that WE have paid for through working! Decreasing SSDI benefits is only stealing from the citizenry, it is NOT a reduction in government spending. It's essentially a tax increase on one of the most vulnerable populations in this nation.

Original Article:
http://www.washingtonpost.com/politics/social-security-disability-trust-fund-projected-to-run-out-of-cash-by-2016/2012/05/30/gJQA3AfH1U_story.html


YOU CAN HELP! Contact your Representative — Contact Your U.S. Representative
If you are unsure what to say, below is a sample letter.

Dear Madame or Sir:

Hello, my name is [put your name here], and I am writing today to ask for your assistance and commitment to ensuring nearly 11 million Americans with disabilities maintain access to the full scope of benefits they have earned and rely on to make ends meet. The SSDI program is NOT a welfare program. It was paid for with MY contributions and by my employers' matching contributions. Blocking or reducing these payments is not fair or ethical, and it places one of the greatest at-risk groups in harm's way. Even though many rely on SSDI for their sole source of income, it is not wnough to keep them above the poverty line. A 20% reduction in benefits is going to create an immediate welfare crisis— where once there was none— for one of the most vulnerable groups.

As you are aware, following the inaugural convening of the 114th Congress, the House of Representatives adopted a rules package which barred the transfer of funds from the general Social Security retirement fund to the disability insurance program (SSDI) - a move employed 12 separate instances by Congress during the last seven decades. Unfortunately, this could not have come at a worse time, as the Social Security Administration projects SSDI insolvency by the end of 2016 without Congressional action, resulting in payment reductions by 20 percent to SSDI beneficiaries.

Contrary to popular belief, people with disabilities have more high school graduates, more college graduates, and more overall degree holders per capita than non-disabled people, so disability is NOT being used as a way to avoid minimum wage work. If poverty traps weren't built into the federal disability programs, most these people could command respectible, middle-class salaries. As things stand, beneficiaries who want to work must choose between the benefits they need and the work they want.

There is an immediate and easy fix: Reverse the House Rules. I, along with a nationwide community of like-minded individuals, call on you to address and remedy this manufactured Social Security crisis. While we certainly believe there is an appropriate time and opportunity for further debate on securing the long-term sustainability of our country’s insurance programs, such a conversation and politically charged debate should not come at the expense of peoples with disabilities lives!

Please do what is right. Change the House Rules immediately and show some of our nation’s most at-risk population that their government won't sacrifice their lives in the cross-fire of partisan politics, that the mismanagement of our nation's economy doesn't need to be paid for by those least able to afford it.

I eagerly await your response.

Thank you,
[Your Name]
[Your Email]
[Street Address - important for voter identification]
[City, Zip]

Tuesday, December 30, 2014

The Best Laid Plans...

Often run into technical difficulties. My friend flew in from San Diego for the holidays and to take a look at my computer. We finally got a BIOS error beep that told us it was either the video (which wasn't working) or the RAM... Again. So we went to the store, in the awful cold and snow, and got a video card with money I didn't have, got back home (me white knuckling it in fear the whole way), only to discover— of course— it's not the video card. We now get to back to the store, return the video card, my friend gets to fly back home to San Diego with the motherboard and RAM, exchange it again, bring it back on his next visit and put it all back together once more.

Meanwhile, I'm stuck with only my iPad and a laptop with a randomly working display, a battery that won't charge, broken keyboard, and prima donna power cord that doesn't like to be moved ot the whole thing goes off without warning. This is not a good work machine. So I am stuck, once more, writing everything with my thumbs. The scary part is... I'm actually getting good at it!

The manuscript also came back from the editors, and they love it! But they would like me to add more, and I love the places they mentioned, because they were exactly right. I've been too close to the manuscript and I overlooked places where I though I had told the full story, but I clearly had mot, based on their questions. So the manuscriot is not ready to go to typesetting. Which is good, because I don't have the machine to support the next few steps.

Writing continues to be fun, despite my uncanny ability to destroy technology around me. I'll keep everyone updated!

Saturday, December 20, 2014

So When Do We Get to Buy a Copy of Your Book?

Welcome to the wonderful world of to publishing, where writing the book is only half the job! It goes like this:

1. Write the book
2. Typeset the book for publication (the phase I'm in now)
3. Buy first ISBN number for the eBook (required for the next step)
4. Create the book front cover, back cover, and inner jacket material
5. Submit the book and associated material for Approval
6. Wait for Approval
7. Get approval or go back to step 2 or 4
8. Get Proof Copy
9. Make changes and go back to step 6 or approve and publish
9. eBook gets published in about 48 hours, tell EVERYONE.

Then...
10. Typeset the book for print publication
11. Buy another ISBN, Bar Code, and a Library of Congress Code
12. Reformat the covers & material for print publication
13. Submit book and materials for print publication
14. Wait for approval (several weeks)
15. Get approved or go back to steps 8 or 10
16. Get a proof copy
17. Check for errors
18. Make changes and go back to step 16 or approve for publication
19. Paperback gets published, tell EVERYONE.

So as you can see, I have a lot of work still ahead of me. I'm doing this on less than a shoestring budget, and I've enlisted a lot of volunteer help. A long time ago I learned: "You can have it quick, you can have it cheap, or you can have it quality. Choose two." I'm going for cheap and quality, which means it's going to take TIME. *sigh*

I was just so happy to write in my blog instead of the book, and I wanted to let you know I was quiet with good reason! As a result I have to ask you one again to be patient, and believe me, you'll know when the book is available for sale!!

[March 10:] It's up!!