This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

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How Did It Get Political?

A couple of weeks ago, I wrote about Dr. Amy D. Waterman at UCLA’s Division of Nephrology’s Transplant Research and Education Center. We’d met at Landmark’s 2017 Conference for Global Transformation. She has brought to the world of dialysis and transplant the kind of education I want to see offered for Chronic Kidney Disease. I also asked for ideas as to how I could help in developing this kind of contribution to CKD awareness… and the universe answered.

First the bad news, so you can tell when the good news come in. Here in the U.S., The National Kidney Foundation at https://www.kidney.org/news/national-kidney-foundation-statement-macarthur-amendment-to-american-health-care-act issued the following statement on May 3 of this year:
“The National Kidney Foundation opposes the American Health Care Act (AHCA) as amended. The amendment to AHCA, offered by Representative Tom MacArthur (R-NJ), raises significant concerns for millions of Americans affected by chronic diseases. If this bill passes, National Kidney Foundation is highly concerned that insurers in some states will be granted additional flexibility to charge higher premiums, and apply annual and lifetime limits on benefits without a limit on out-of-pocket costs for those with pre-existing conditions, including chronic kidney disease. The bill also permits waivers on Federal protections regarding essential health benefits which could limit patient access to the medications and care they need to manage their conditions. These limits could also include access to dialysis and transplantation. For these reasons, we must oppose the legislation as amended.


In addition, National Kidney Foundation is concerned that the elimination of income based tax credits and cost sharing subsidies, combined with the reduction in funds to Medicaid, will reduce the number of people who will obtain coverage; many of whom have, or are at risk for, chronic kidney disease (CKD).”

The world sees what stress Trump is causing our country (as well as our planet.) Yet, there is hope in the form of a new bill.

“… the bill — introduced in the House by Reps. Tom Marino (R-Pennsylvania), John Lewis (D-Georgia) and Peter Roskam (R-Illinois) — aims to:
• Have the Department of Health and Human Services (HHS) and U.S. Government Accountability Office (GAO) issue a series of recommendations to Congress on “how to increase kidney transplantation rates; how palliative care can be used to improve the quality of life for those living with kidney disease; and how to better understand kidney disease in minority populations” – to back federal research efforts;
• Create an economically sustainable dialysis infrastructure and modernized quality programs to improve patient care and quality outcomes — for instance, by creating incentives to work in poorer communities and rural areas;
• Increase access to treatment and managed care for patients with a confirmed diagnosis of kidney disease by ensuring Medigap coverage for people living with ESRD, promoting access to home dialysis and allow patients with ESRD to keep their private insurance coverage.
According to the National Kidney Foundation, more than 660,000 Americans are receiving treatment for ESRD. Of these, 468,000 are undergoing dialysis and more than 193,000 have a functioning kidney transplant.”

Thank you to the CDC at bit.ly/2rX8EG5 for this encouraging news. Although it’s just a newly introduced bill at this time, notice the educational aspects of the first point.
For those outside the U.S, who may not know what it is, this is how Medicare was defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease “U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.”

An interview with Trump while he was campaigning last year was included in SlowItDownCKD 2016, (11/14/16) This is what he had to say about medical coverage for those of us with pre-existing conditions like CKD. (Lesley Stahl is the well-respected interviewer.)
“Lesley Stahl: Let me ask you about Obamacare (Me here: that’s our existing health care coverage.), which you say you’re going to repeal and replace. When you replace it, are you going to make sure that people with pre-conditions are still covered?
Donald Trump: Yes. Because it happens to be one of the strongest assets.’ ….
What does the president elect say about Medicare? Those of us over 65 (That’s me.) have Medicare as our primary insurance. I am lucky enough to have a secondary insurance through my union. How many of the rest of us are? By the way, if Medicare doesn’t’ pay, neither does my secondary.”

This is from the same book:
“Here’s what Trump had to say in a rally in Iowa on December 11th of last year (e.g. meaning 2015).
‘So, you’ve been paying into Social Security and Medicare…but we are not going to cut your Social Security and we’re not cutting your Medicare….'”

We do not have the most truthful president here in the U.S., so you can see how even the introduction of the Marino, Lewis, Roskam bill is good news for us. While this is not meant to be a political blog, our pre-existing illness – our CKD – has caused many of us to unwittingly become political.


I see myself as one such person and so will be attending the AAKP Conference in St. Petersburg, Florida, in September. What’s the AAKP you ask? Their Mission Statement at https://aakp.org/mission/ tells us:

“The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education
The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy
For more than 40 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community
AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.”

For those of you of can’t get to the Conference, they do offer telephone seminars. The next one is June 20th. Go to https://aakp.org/aakp-healthline/ for more information.

Talking about more information, there will be more about AAKP in next week’s blog.
Until next week,
Keep living your life!

Renal Foodie

It’s that time of year again. We have holidays of religious significance.  We get to see friends – old and new – that we haven’t seen for a while.  If we’re lucky parents, we get to see all the kids at one time. We even get to play with busy members of our families, such as when my step-daughter, Lara Garwood, asked me to go to our local Glendale Glitters event to see the lights.photo (2)

I’ve figured out how to stay within the renal diet guidelines at the parties we’re invited to and when we entertain here, but this time it’s different.  Our future son-in-law, Sean Rasbury, has taken over yet another family tradition: Christmas Eve dinner. The Arizona family alone has six members. Add assorted boyfriends and best friends and the number can go much higher.

I didn’t think it fair that he cook for everyone even if he is the one who has the day off, so I offered my help.  And he accepted, suggesting I cook a side dish.  Great!  Now I can get some veggies in!

When I went to the market for the ingredients I needed for this dish, I became aware of just how carefully I look at nutrition labels (the number of people politely waiting for me to move out of the way and then ahem-ing when I didn’t notice them may have had something to do with that) and wondered how many other people knew how to read them.

We are chronic kidney disease patients.  We do not have the luxury of tossing anything into our systems, yet we need to make the food we share with others tasty.  How to do that?

Leave it to the FDA to make this easier for us. When you go to: http://www.fda.gov/Food/ResourcesForYou/Consumers/NFLPM/ucm274593.htm you’ll find this chart.label

If you explore the page, you’ll find explanations for each designation on the chart.  It’s been color coded for your convenience, nice touch that.

Notice not all the electrolytes you need to watch are itemized, but at least you now know what you’re looking at when you see these labels. You can always use the downloadable booklet at http://www.aakp.org/brochures/nutrition-counter/nutrition-counter-english/ to see the electrolyte contents of each of the 300 foods listed in this booklet.  By the way, it’s been mentioned repeatedly that portion size is the key to the success of the kidney (renal) diet.

On the FDA site that has the chart, you’ll find explanations of serving sizes (Boy, do we ever need that!), links to specific recipes for low sodium diets, diabetic diets, pregnancy needs, heart friendly food, even a daily food tracker. In addition, there are downloadable shopping lists for healthy food. There’s also advice about how to pick out healthy food and including your children in planning the family meals.

Come to think of it, I seem to remember, my youngest daughter, Abby Wegerski’s teacher using this chart to re-enforce her math lessons in third grade. What a clever young woman she was. Or was she simply nutrition conscious?

Chicken-Dumpling-Stew-7DaVita has some holiday cooking tips of their own.

“Use kidney-friendly substitutions for your meals

Are you cooking a dish for a party and want to make sure it doesn’t pack on the pounds? If you cook, use healthy recipe substitutions for your kidney diet dishes. Listed are some ingredients a recipe may call for and the kidney-friendly substitute to use instead.”

Recipe calls for: Substitute with:
1 whole egg 2 egg whites or 1/4   cup egg substitute
Sour cream or cream   cheese Low fat sour cream   or low fat cream cheese
Sugar Splenda® or other   low calorie sweetener
Oil (for baking) Unsweetened   applesauce
Regular Jello® Sugar-free Jello® or   gelatin
Fruit packed in   syrup Fruit packed in   juice

You can find more of their holiday eating tips at: http://www.davita.com/education/article.cfm?educationMainFolder=diet-and-nutrition&category=special-occasions&articleTitle=five-holiday-eating-tips-for-people-with-kidney-disease&articleID=5371&cmp=dva1203_feat_art_five_holiday_tips

I do have to write something about the use of the sugar free products.  I wouldn’t use the substitutes, but would lower the amounts of sugar used in the recipe instead.  Sugar is 15 calories per tablespoon and is much healthier than any substance that has been altered in any way.

Until recently, I felt safe substituting unsweetened applesauce for sugar, but with the recent publicizing of genetically modified foods, I don’t trust the product anymore.  I would expect to see some central clearing house to list GMOs in the near future.

According to Wikipedia, “Genetically modified foods (GM foods, or biotech foods) are foods derived from genetically modified organisms (GMOs), specifically, genetically modified crops. GMOs have had specific changes introduced into their DNA by genetic engineering techniques.”  You can read more about this at: http://en.wikipedia.org/wiki/Genetically_modified_food

As I researched GMOs for this blog, it seemed to me articles were either written and posted by health proponents urging they be avoided or businesses promoting them.  Cravat: this is not something I researched in depth and this is simply my opinion.

So, are you now afraid to eat or cook this holiday season?  Don’t be.  Part of the enjoyment in life is sharing good meals with our loved ones, maybe even with those we want to become our loved ones.   Enjoy yours.th

On a more private note, I’ll be taking both a copy of the renal diet and my own copy of the AAKP’s nutritional content booklet with me (And, of course, my book which has an entire chapter on the renal diet) when we go to Florida next month. I know what I can eat here at home, but we’ll be in a different place with different people cooking for us and going out to restaurants I probably never heard of.  I am so eager for my brother and sister-in-law – Paul and Judy Peck – and my cousin Nina Peck and her partner, Sandra, to finally meet Bear after all these years of hearing about him.  And, icing on the cake (of course I’d use a foodie phrase in this blog), we get to see my junior high school buddy Joanne Dana Young-Melnick and her husband Norman again!!!!

I know tomorrow is Christmas and the day after is Kwaanza, but you can download the electronic version of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease immediately as a last minute gift for someone who has CKD, has a family member or friend who has it, is in the renal field, or is just plain curious.  It’s $9.95 at both Amazon.com and B&N.com. The Table

Until next week – and the last day of 2012,

Keep living your life!