Untangled Health

Consumers Unite To Drive The Changes We Need

Tag: Professional Patient Advocates

Right Care Action Week Event

Untangledhealth.com conducted a Right Care Action Week Cafe for The Right Care Alliance on October 19th at Elder Path Raleigh; an MKP.org Men’s Group. We discussed, engaged, educated and empowered this group of elders to master their future health through selecting providers and institutions that offer  the highest quality, highest value services with proven integration of clinical services throughout the continuum of care.  I am excited to see this community of men step forward to model active consumerism in Health Care and dedication to teaching their peers the methods consumers can use to evaluate their regional resources. 

Topics covered included the Self Advocacy Process, Selection of High Quality Health Facilities and Providers, The Five Wishes, Transitional Care Hazard Avoidance, Medication Cost and many others. As always, UntangledHeath.com’s desire is to teach patients to advocate for themselves and their families.

We look forward to working with the Right Care Alliance in the future.

The pictures below include slides from our discussion. I will be recording the entire presentation soon!

Open-Access Guidelines for Patient-Centered Care (The tools we need are here!)

patient logo

How do I find the best treatment for me? Is it my doctors choice? Do I have anything to say about it? Is it possible that my doctor is unaware of best treatments?

Taken from the British Medical Journal. Click link to view the Aortic Valve Replacement Guideline.“The BMJ launched an innovative strategy to promote patient partnership in 2014. It took this step because it sees partnering with patients, their families, careers and support communities, and the public as an ethical imperative, which is essential to improving the quality, safety, value, and sustainability of health systems.”

 

My suggestions:

Make sure you read the educational material your clinic gives you at the end of the visit then compare it with what you are able to find independently. This is most important when you are diagnosed with a new condition or your doctor recommends a diagnostic or surgical or therapeutic procedure. By the way, new medicines are therapeutic procedures.

Since errors happen…what I choose to call Therapeutic Misadventures I like to check out the current best practices and research outcomes published in Europe, Japan and the USA.

Cool Tools are here!  Everyone knows that I am a big promoter of physician-patient partnership when it comes to researching treatment methodologies and selecting interventions for our personal care-plans. I received notice today on the MAGIC projects publication of guidelines in the British Medical Journal. This particular guideline is for Aortic Valve Replacement. BMJ provides an online experience for doctors and patients called Partnering with Patients. The  content provided on the site includes best practice guidelines for many medical procedures. One source of the guidelines is MAGIC project.

This is an international group, originating in Oslo, Norway operating as the MAGIC project. Magic is an acronym for “MAking GRADE the Irresistible Choice,” where GRADE is a system to develop high-quality guidelines that consider the whole body of evidence on a certain therapy in an objective way, and incorporate patient values and preferences, as well as other considerations.

For the consumer this implies the MAGIC team applies a scientific rigor to weighting the evidence supporting the effectiveness of medical and surgical interventions. The real bonus is that they also employ the patient’s perception of effectiveness which can often be missing in research studies. A common example I like to use is change in mortality rate. Example: If I have emphysema and experience failure of my respiratory system I will die. However, there is a variety of life sustaining interventions available to me in the USA. These include: Supplemental Oxygen, inhaled and oral medications and mechanical ventilation. Virtually all people with severe emphysema are faced with making a decision as to the technologies they will use to extend their life. Many choose all three: Then again, I have had many patients in the past elect to not receive mechanical ventilation as the notion of being connected to a ventilator for the remainder of their life is not acceptable.

When any of us with chronic illness take advantage of a therapy I would hazard a guess that we should always take the pre and post treatment morbidity and functional status into account. Questions we need to ask must include the published guidelines reported changes in health related quality of life after treatment.

I hope these projects become the foundation for a curated library of best practice and treatment outcomes in the near future. Of course my preference would be to make them free for patients which might level the playing-field for those with low incomes in societies with huge disparities in care and health between the wealthy and impoverished. That said, as I learn more about the availability of the guidelines and find those that are free and unbiased by funding resource or error in design I will publish them here.

Have fun and educate yourself prior to making any decisions on how to manage your health.

Warmth to all of my friends along the way.

Jeffrey 

Here are link to Magic

 

The Onslow Magic Project for clinical guidelines

 

 

What is at risk if Obamacare is Rescinded

Reconciling data in my six health portals

What is at risk for all subscriber to commercial insurance programs if Obamacare is Rescinded?

This analysis with specific allegorical references was posted by my friend Wendy today. I find it accurate and far beyond my skills to interpret and describe What is at risk for EVERY-BODY

Obama Care is. . . The ACA (Affordable Care Act)
Last night as his first order of business the new president signed an executive order to repeal the ACA. Here’s what this means… even if you are safely covered behind employer-provided insurance, the protections set forth in the ACA (Affordable Care Act), apply to you too. And if those protections are repealed along with the rest (or any part) of the program, you will also be affected.
That means you may be trapped in a job, because your pre-existing condition may mean you will not qualify for new insurance offered by another employer, and the cost of private insurance would be prohibitive. If your employer shuts down, lays you off, or even changes insurers, well, you are out of luck. The Senate GOP voted this week that they would not require an eventual ACA replacement to protect against discrimination for pre-existing conditions, which was the standard before the ACA.
It means that you (a young adult under the age of 26) or your adult children (over 18) may find yourselves without the protection of insurance, as the Senate GOP voted last night that an eventual ACA replacement will not be required to allow young people to remain on their parents’ insurance up to the age of 26.
It means that if you have a high-risk pregnancy, or life-threatening illness such as cancer, you may not be able to afford all the care you need, because you may hit lifetime or annual caps. If you have an infant born with any kind of severe medical condition, or premature, they may hit their lifetime insurance cap before they are old enough to walk. The Senate GOP voted last night that an eventual ACA replacement program would not be required to prohibit lifetime insurance caps.
It means that if you are a struggling parent who is uninsured or under-insured, you will no longer be able to count on at least your kids getting the routine medical and dental care they need under the Children’s Health Insurance Plan (CHIP). The Senate GOP voted that CHIP is not required to be protected by an eventual ACA replacement.
These provisions of the ACA affect everyone in this country, not just those without insurance through their employers.
If you are not okay with these changes, call your representatives and let them know what’s important to you. Nothing has been set in stone yet, but our legislators have shown us a map of what they plan to do if constituents don’t make their voices heard loud and clear.
Hold down here to copy, paste, and post (do not share) on your timeline, if you feel this information needs to be passed on.

This is a comment from NORA on FaceBook
As a person with R.A. (pre-existing condition) Before ACA I was never able to purchase even basic insurance for under $1500 a month and thus went without insurance from the time I graduated University until I was 49 years old. It’s $2000 per visit to a Rheumatologist, so I only went once a year and could not afford medications. I lived with daily debilitating pain and exhaustion among other things. If you know somebody with RA you know is serious. ACA provided me with good affordable care at a price I can afford $359 a month. I responded very well to BASIC medications for RA that I could never afford before (but with ACA can) and am now able to live life normally and run my small business again. My great Doctors also noticed I had serious liver damage from years of taking OTC pain relievers like Tylenol and Aleve. They were able to fix that too. They said it may have killed me or become cancer without treatment, at the least led to early death. If I lose coverage for my Meds am already planning to go on SSD and Medicaid and close my business. True Story. #ACAWORKS PS Only deplorables don’t want people to have health insurance.
Like · Reply · 1 · 19 hrs · Edited
Wendy Lannon
Wendy Lannon I think of you Nora whenever I hear people say ACA doesn’t work. #ACAWORKS

SalesForce as a Patient-Centered Longitudinal Care Platform | I am one happy Diabetic!

The technology facilitating Patient Centered Care arrived over ten years ago. It was all a matter of configuration!

The technology facilitating Patient Centered Care arrived over ten years ago. It was all a matter of configuration!

I am pumped!
Years ago…1997 I believe; I had a job working for DocSite: the company founded by Physiatrist John Haughton MD that became one of the premier Registry products used as the EMR community was attempting to define itself. In the DocSite product we collected measures or “clinical indicators” that were compiled around the patient and associated with an infinity of conditions. Essentially the data design allowed physicians and grant recipients to have a single patient record yet extract, analyze and report on any constellation of outcome measures without having to spend money on redundant disease registry products. Example: Blood pressure is an important measurement for diabetes and heart failure. In diabetes the measure importance is 1) how often it is done and 2) the blood pressure value. In Heart failure the same measures of process (measurement frequency) and outcome (BP value) are required but they might be different depending on the cardiovascular guideline and contrasting diabetes guideline. In the DocSite system the blood pressure recording was simply a vital sign. The rules defining threshold for compliance with guideline were defined separately and associated with multiple conditions. When the doctor generated the data for PQRI and the Cardiovascular Excellence programs a single patient outcomes dataset was generated based on the programs associated with the patient. When the patient returned to any clinician using the Docsite system the Visit Encounter Sheet displayed the current measures due, the last values and trends for each measure and gave the physician or extender a place to generate an education note. Inexpensive, simple, multi-user, modifiable for EBG and data submission automated through clerical “generate and send PQRI data”. Now, I owned some stock in the company so I am biased but quite frankly I thought the system was elegant once it received data feeds from pharma and labs!

All of us at DocSite used a Client Relationship Management cloud application in our client services department. After using it for three years or so those of us that had worked in a previous company “the forerunner of DocSite” called Cognimed all thought that Sales Force had the proper design to create a community wide care coordination and patient centered care planning tool We had built one in the 1990s and sold it and moved on with our lives.
Today I see SalesForce has entered the arena. Knowing what I know about its capabilities I hope they capture the market by landslide. Please if you thinking about building a new care management platform…dont. As a patient, I would love to see this thing as an App. in all of my clinicians hands and on my IPhone please. Check out their demo. I am sure it all does not work as advertised but I can attest to the fact that they had the correct data model ten years ago!

Reconciling data in my six health portals

Reconciling data in my six health portals

Time to pull the sheet out from underneath healthcare in America. In one step. Eliminate Insurance, Medicare, Government Programs, and see what we come up with. Please leave a note on my grave as to the outcome.

someone-to-watch

Thank you friends from LinkedIn today. Those discussing our frustration and describing a need to sit down and discuss the disaster that was and the disaster that will be.

Without action that-is!

Rephrased: My friend states our Medical system is far to complicated and polluted with bad ideas to resolve through a bunch of silo business meetings of silo organizations who define for us consumers exactly what health is, what we need to consume to maintain it and how much we should pay!

My point was to provoke: Strictly because I have similar judgments. I recently have seminar to senior men on functional decline over life for avg American male. Then overlay of possible interventions and services through death. Then described business layer and regulatory layer.
Your point Bruce Pisetzner is precisely why we need to define the pain for all stakeholders. When I say “stakeholder” I include consumers from all socio-economic classes as well as the professionals who treat them and the “business opportunities” created between 1965 and today that supposedly state a clear value added to the system of care.
Spent my career sketching iterations of your shell games. It seems to me: and I hold a straw-man judgment; that 1) as a country we have no agreement on what “health”is e.g. functional status, emotional status, absence of disease, bio-psychosocial well being etc. Far too much room to allow a free-market enterprise to explode without revisiting what is necessary to achieve healthy population goals.
Then of course we have the employer – employee entanglement.
Then of course the Government – Defined Benefit issue.
As patient with chronic disease, provider – admin acute care for 8, provider-admin post acute for 10, HIT product architect for 10 and community healthcare integration consultant for 10; predictive analyst for 8: I have watched the money flow. Oh how I have watched the money flow. Some even into my pocket. $25K a year out to stay alive and well with diabetes.
Perhaps it is time we all tell the truth. Insurance company, Large Employers, Small Employers, Provider Types, Patient Types and so on.

I created this blog post on the fly but thought it important to get out here now!

cropped-stcroix-jeff.pngsevere retinopathy

An advocate gets busy while every politician and “talking head” takes credit for healthcare model ideas published long ago.

Reconciling data in my six health portals

Reconciling data in my six health portals

I watched Barbara Starfield again last night. She passed away in 2011 but it seamed as though she was sitting in my living room telling me everything will be alright but many of us will never get our way. Barbara spent several decades studying the characteristics of health systems all over the world. Her final conclusions were simple and easy to implement as long as social agreements were made between consumers of healthcare services and their providers. The contract (sort of) is that my primary care doctor will be available when needed if I promise to contact his or her office before going to the ER for an earache or other non-emergent condition; my doctor also agrees to follow my care as I transition through life stages and address all mental and physical health conditions as they arise by assuring I connect with the correct specialist if required. The specialists in return are in constant contact with my primary care doctor so the primary care clinic is coordinating continuous and comprehensive care and reviewing all interactions between myself and other medical environments. Like I said earlier this week. Someone to watch over me. I first learned of Dr. Starfield in 2001 and followed her publications. Funny, she was never accepted to sit on any best-practice boards but the scientific community considered her work to be spectacular in terms of statistical approach and quality. In other words, she looked for the null hypothesis also.

Again…concerns over repeal and replace.

Some more diatribe with hope at sarcastic humor is written for you below. Please follow through to the end as I pasted a really cool graphic pointing you to a new society of consumers and professionals that might fix the system over the long run.

The conversation doesn’t stop at my dinner table, on my phone, through IM or Facebook. It seems as though my popularity index took a healthy bump after November 8th, 2016. I wish I could be happy about the reasons for the traffic.
“Jeff, you are on Medicare are you concerned?”

Well yes; you see, as we become older the likelihood of needing assistance from case managers, specialists, short stays in skilled nursing or rehabilitation facilities increases. Same with home health services which is always the preferred place to recover from the self-inflicted fractured hip that occurred while my masculine ego informed me of my capacity to clean out my gutters.
One of the most important changes to the clinical language coming from Obamacare is the right for all patients cared for by primary care doctors with Medicare contracts to receive “Coordinated, Comprehensive Care”. Lately you might have heard the terms: “Patient Centered Care” or “Medical Home”. You probably heard President Elect Trump mention “Patient Centered” or a new commercial by Humana presented by a handsome young doctor stating that Humana’s system of Patient Centered Care is superior because of their capacity to coordinate your care within their “medical community”. Then you will watch a local conservative pundit state: “those stupid narrow networks tried through Obamacare didn’t work: here is a toast to repeal and replace.
This stuff cracks me up for the same proponents of patient centered care realize that closely collaborating narrow networks can provide you with clinical personnel that understand your needs better than anyone else! In fact, they have the same attributes of a Patient Centered Care Team using a single medical record and plan of care to increase safety and minimize mistakes. Yet you will hear no one (perhaps save me and a few of us that are tired of scraping the poop off our boots) tell you that the words Patient Centered, Narrow Network, Accountable Outcomes, Value Added Payment, Medical Homes, and all other terms implying a tightly coordinated, error free clinical team surrounding all patients are not original concepts. In fact, they are in place in many of our successful neighbor nations who provide universal enrollment and have always demonstrated lower reliance on emergency room services for basic medicine, better health outcomes and no difference in treatment effectiveness for cancer, diabetes, cardiovascular disease and other leading causes of premature mortality. Our own CMS (The Centers for Medicare and Medicaid Services) have published the policy here July 2016:
So all of a sudden the administration of 2017 will be using terminology invented by others to describe care models that work after years of academic surveillance by healthcare policy analysists and already written into The Patient Protection Affordable Care Act or what the opponents call “Obama-Care”.
My prediction is we will keep the new payment systems for coordinated care and chronic disease care management. However, the credit for the success will fall under a new Trump label. My fears is that the same three insurance companies comprising the oligopoly of payers for American Healthcare will recoup their lost profits of mandated care without premium inflation for the chronically ill by shifting the premiums higher for those with pre-existing conditions. So here is another question from the week:
“Jeff, what will I do now I couldn’t get covered because of my history of cancer before the ACA?” “What if “Trump-care” requires coverage for pre-existing illnesses but allows insurance companies to include the illness in the premium pricing model? “ My response to this question was “not sure, my cost in the NC High Risk Insurance Pool for my diabetes prior to Obamacare was $1200.00 per month not including co-pays. Today it is $350.00.
More on Patient Centered Care AKA Medical Homes AKA Integrated Care AKA Chronic Illness Care.
I discussed the integrated care model and its payment adjustments to my Men’s group on Thursday night as they requested a primer on planning for their last ten years of life. Their hope was that our system of care had evolved and they would not have to lose their homes to cover the long-term care charges. Many of the guys in my group neglected to buy long term care insurance when they were young and healthy, had since suffered a chronic disease diagnosis and episode of treatment and no longer qualified for long term care insurance. They could however place $10 K per month into an account to pre-pay up to one year of long term care. This is what my father did: In 2006 he entered into a contract with a transitional care organization. He paid them $350,000 for full access to assisted living and long term care until his death. They also allowed him to live in the attached apartment complex for independent seniors for an additional rent of $3200 per month including one meal per day. Not a bad deal eh? Oh yeah…one more oversight: My friends ; all retired upper middle class professionals had no idea that Medicare didn’t pay for long term custodial care either in home or inpatient facility.
Now, like I said the other day, I am a bit tired of shouting the truth to those who were unfortunate enough to buy into the following promise: “Oh we will have the most wonderful healthcare system in the world” and “We promise to repeal the expensive policies and replace with something better.
We were on our way folks: The biggest mistake, President Obama’s team was denied the necessary Medicaid expansion for ALL not SOME States by our supreme courts. If you don’t understand the math I will be pleased to describe it in another column. Basically when the folks that would have had access to Medicaid don’t receive the insurance they still consume services. The loss of revenue winds up on the balance sheets of hospitals and providers and they respond by increasing their cost per service. The insurance companies pay more and your premiums increase. So… my neighbors policy (55 year old male) in NC costs $11,000 per year. The very same policy in New Hampshire where they expanded Medicaid costs $5,500 per year. As Mr. Obama leaves keep in mind that the rate of increase in health costs since the inception of Obama Care is the lowest it has been in 40 years.
Somehow, someway; we need to cover everybody. If we do not we cannot cover the losses incurred in the private sector without the Magical Thinking that has been sold you for so many decade. Hide the losses, get others to pay for the losses through modest increases in cost of living and blame the doctors, and hospitals who give away more free care than you could ever imagine.
What would happen if our incredible consumer driven internet harnessed the decision support technology that we use daily on Amazon and instantly brings the right service to you when needed should you or a loved one become ill? What if we harnessed IBM Watson to make the diagnosis thereby reducing error rates and reducing unnecessary utilization of expensive diagnostic procedures?
What if we didn’t need insurance companies any more to assess population risk and perform preauthorization services while we waited for our new medication?
Since we have all of the data connecting lifestyle, culture, nutrition, infection and the human genome can anyone appreciate where we are headed with our capacity to discover the cause of disease and effect of treatment? This is not decades from now my friends; it is within the reach of our children’s lifetime. I have wonderful friends with incredible scientific minds that are creating open source technologies to accomplish human collaboration like humankind has never witnessed. The only barrier to their success is a loss of priority to cure disease, increase well-being and expand the functional-years of human life.
Or…we can keep these technologies secret, forget those we have developed through the natural sequestration of competing private enterprise and traditional silo thinking. If this is where we are headed then the best investment to assure a painless end of life if you are not surrounded by humanitarian friends is my undying support for the second amendment. If you catch my drift.

Check out Right Care Folks!

Right Care Now

Right Care Now

Community Care of North Carolina goes for the gold: Proving valid reduction in hospitalization among Medicaid enrollees with Chronic Disease

Heck! With health insurance we can afford a cup of coffee!

Heck! With health insurance we can afford a cup of coffee!

I have not been posting much lately due to activities with the Patient Centered Primary Care Collaborative. We are working on an analysis of accreditation standards which will ultimately be used to verify Medical Home processes, procedures and clinical outcomes. Check out their website as you consumer types will have a chance to see what others are doing for you to assure you access to the best in health care as we reform the system over the next few decades.

I am very enthusiastic these days as I am seeing the changes I have hoped for my entire life as person with diabetes since 1966. As a child my doctor was always available to teach how to master my illness and provide tips with mechanisms I could use to reduce my cost: especially when I entered college. My docs have been so cool, I can never adequately thank them. Purchasing a glucometer and testing reagents for me when I was uninsured; providing free laser therapy when my employer dumped the plan I had in favor of becoming self insured. If you want an interesting read see an old post of mine titled Physician heroes.

Today I call your attention to Community Care of NC. The organization that employed me as their clinical informatics lead back in 2002. These folks are using a model of population management and patient care that I had seen work in Massachusetts in the 1990s. To that end my wife and I moved here in 2001 to work for CCNC. They use a centralized partnership between private healthcare industry and public agencies including Medicaid, Public Health, Mental Health and Substance Abuse Services, the NC Medical Society and the local branch or thee Academy of Family Physicians.

The central teams keep improving patient targeting and clinical outcomes analysis using a variety of statistical sources and deliver regionalized community information from 12 different 501c3 Community Care Networks. The individual Networks then put care coordinators, case managers, pharmacists and administrative staff in place to create local flavors of patient centered care. All have guiding physician committees and other staff who collaborate with subspecialists as well as local hospitals. The net result is a care continuum surrounding the sickest individuals where the team focuses on goals set by the patient, their family and the team. They have been doing this for fifteen years now and I can attest to the fact that they are one of only a few Patient Centered Medical Home Networks in the country that are using a web-native care plan accessible to all on the patient team as well as multiple other physician practice improvement web apps totally focused on education, assessment of each doctors population and measurement of patient outcome.

This week they published the proof in the pudding. After long struggles against threats to defund the program they survived. They are now audited in full and have demonstrated hospital utilization rates falling at 10% per year in the chronic disease population. We are talking HUNDREDS of MILLIONS of DOLLARS in savings folks on top of hugely improved clinical outcomes and patient satisfaction with their sense of well-being.

I have always said that I needed a lot of help in my life. Since I knew how to assemble a care team for myself I figured I may as well help others do the same. Today, in 2015 we have the mechanisms in play to reconnect patients with their physicians. Please step up and teach your docs about your needs, wants and struggles as it will take us a while to walk out of the woods.

nc hospitalization trends under CCNC

Celebrating physicians who stick with patients that are non-compliant due to financial barriers.

Reconciling data in my six health portals

Reconciling data in my six health portals

 

 

 

THERE ARE LIVES IN THE BALANCE

 

This is a synopsis of my attempt to bring affordable timely retina care to impoverished people with diabetes in Eastern NC. I sent this note to the Medicaid Managed Care entity: Community Care of North Carolina and was able to schedule a meeting as a result.

To: The Executive Director of North Carolina Community Care Networks,

“I have three retina ophthalmologists with nine clinics in four counties that are willing to take Medicaid patients. When I retired they asked me what I wanted to do. They had saved my eyesight and I told them that the disparity in services in NC had been my chief frustration since moving here. I said I would like to find as many diabetics as possible who were not compliant with retinal screening or follow-up care due to financial barriers. They agreed to treat as many as I could find after reading my proposal.

Many physicians are dropping Medicaid patients in NC. I have found some excellent, compassionate doctors who want to help.
Will you please help me strategize for an outreach effort. I will do all the work.”

I created a program guide for Medicaid describing access rules and services available. I started with Medicaid because their process outcomes revealed 40%-50% of diabetics missing annual eye exams. Furthermore this was in counties where over 1/3 of the diabetic populations had poor control (A1c > 9%) and therefore were more likely to have disease of the retina.

I met with the Community Care folks who (in my opinion) have a wonderful care coordination and patient centered care model. They informed me that they couldn’t perform specialty referrals as it showed preferential treatment. I responded with:” Many ophthalmologists do not see Medicaid patients and your data point out an underserved chronically ill population. I went on to say that the local hospital charged for a vitrectomy was $12,000 and that my friends would be willing to contract for $3900. They responded with a requirement that I recruit doctors from other practices.

So the retinal surgeons I was working with created a business relationship with an optometry group to perform annual screenings. Since Medicaid had stopped paying for eye exams in non diabetics, many diabetics stopped scheduling their exams as they also thought their services were dropped. However NC Medicaid does cover optometry for persons with diabetes. I guess the messages have not been tested for clarity and understanding in the Medicaid population?

After spending 9 months working with this ophthalmology group to reach out and treat people who are literally going blind due to gaps in care, addressing the needs of the Managed Care Organization (Community Care of North Carolina or CCNC) and following up with additional requests for an audience with their primary care physicians we received no follow through from CCCNC and we have continued to treat diabetics as they trickle in from primary care and emergency room practices with acute retinal hemorrhage and vision loss.

I imagine this is a political issue, as irrational behavior in healthcare systems is usually due to hidden agendas that go unseen in the public. Unseen you say! Yes the pun is intended.

We apologize to the impoverished diabetics of North Carolina, we are here for you, will  always assure you get the best care regardless of your capacity to pay.

If you need help visit this website and schedule an appointment. Taylor Retina Center

These folks saved my vision and I am sure they will save yours if you are able to get to them in time. I hope to have wider support and advertising from agencies trusted with reaching out to help you in the future. For now, no luck with Medicaid CCNC.

The images below illustrate a normal retina and a young 20 y/o diabetic woman with severe diabetic retinopathy as she appeared during her first visit to the clinic’s practice. One must appreciate how much retinal tissue can be lost before the patient notices the change. This is the underlying reason for annual – biannual screenings. When I interviewed the physicians they stated that 20 patients per year appear in their office with this level of injury who are insured by Medicaid or have no insurance at all. They have never denied treatment. Since they own their laser and have ownership in a day surgery center they are also able to address the financial concerns of the operating room provider.

20 year old woman with severe disease                                                Normal Retina

severe retinopathy

A normal retina

 

 

 

 

An expression of gratitude for my first $28,000 bottle of Harvoni!

Can believe NC?

Can believe NC?

Last week I published my offer to not accept resuscitation services in exchange for a full course of treatment with Harvoni, the new Direct Acting Antiviral from Gilead that has demonstrated a 95% cure rate in Hepatitis C patients with genotype 1.

In most cases insurance companies, Medicaid and Medicare is not paying for the medication unless the patient has end stage cirrhosis and is queued for transplant. The reason is easy to understand from an economic perspective yet certainly Draconian when it comes to well over 2 million people in the US who suffer with this debilitating illness. Furthermore the price discrepancy between countries is 94 X when comparing egypt and the USA for example. 

In the US a 1 month supply of Harvoni is $30,000; in Egypt it is $320.00

For more, please see my slide presentation below. For now, I want to thank Federal Employee Blue Cross for covering this medication as well as my much needed continuous ambulatory blood sugar equipment which makes this diabetic completely able bodied when away from home and alone.

 

 

I do not know how or why I was approved. Neither does my hepatology doctor. Both he and I were in tears when the fax came in through his prior approval desk. I am now in my third day of therapy. 

All I did was write a story on my blog and link it to facebook, linkedin, twitter etc. Within 24 hours my friends at Humana had retweeted my message and called me to see if they could help. They were not even my insurance company but this is a great example of how some payers are monitoring the internet for clients in need. 

Human did not get back to me but within two more days we had the approval from Federal Employee Blue Cross (my wifes health insurance). Since they are acting as secondary to my Ordinary Medicare the authorization was up to them. 

So whoever you are at Blue Cross, this is one lucky American who thanks you for the generosity to step outside most payers protocol and save my life. 

What a Christmas Present. 

 

THE POST FROM LAST WEEK

I will happily select a DNR status if you pay for my Hep C Treatment 

Hopeful

Hopeful

An economic model for exchange of value between patient and payer.

 Dear America,

I have been notified by both Medicare and Blue Cross that the technology I use for tracking my blood sugar trends will no longer be covered.

I have been notified by both Medicare and Blue Cross that the antiviral medication which has come on the market to cure my Hepatitis C will not be covered.

I would like to negotiate for coverage of these technologies using my history as a patient and known economic data regarding the cost of care at the end of life as a proposed value exchange. 

I understand that the insurance industry AND public sector should grind their teeth when presented with the $1000 per pill cost of the new therapy’s. I also imagine payers are stratifying patients needing transplant for first access to care since the drugs work on damaged livers. What I do not understand is the 287/1 disparity in cost between America and Egypt?

 

A note to the NC Legislature on Compassion

 

 peace 2 you

 

A letter to the NC General Assembly

 

 

 

We seem to be evolving into a nation of binary people. Binary in the sense of our emotional, tactical and strategic response to our surroundings: On one end we have the Concerned and on the other we have the Unconcerned.

 

Of course you realize I say this in jest, but what if I was right? Are you willing to risk your comfort and explore a possible reality with me?

Please place your religious ideals aside for a few minutes and read on:

 

Hypothesis:

 

  • There is no God
  • No-one will inherit the earth, we have no idea what the future holds.
  • Human beings randomly crawled from the primordial soup some billions of years ago and have evolved to the most intelligent form of life on the planet. When I speak of intelligence I mean cognitive ability and nothing else.

 

 

 

Since we became self-aware we have been unable to escape our internal reality: That we are born alone and will die alone. All of the space in-between (a brief 70 +- years) is filled with experiences arising from the environment around us. We learn –or not that our actions influence our environment and well-being; receive –or not, instructions on how to behave in society and together: “Trudge the road of destiny”.

 

Non-sense you say: “we trudge the road together”!

 

Two weeks ago, as I flew home from a medical conference in Denver, this essay was tumbling around in my mind. I was not sure of the words, but I felt an overwhelming drive to write something about how I currently perceive my world: The one where I wake in Raleigh North Carolina each day, aching from diabetic neuropathy, reflexive sympathetic dystrophy and drained by my hepatitis C, a condition undoubtedly resulting from poor lifestyle choices in the 1970’s.

 

I am observing the adults in my Country of origin become firmly rooted in social belief systems. It appears they are evenly divided between the concerned and unconcerned. At the same time, few fall completely into one group as they seem to be willing to sacrifice their beliefs when under personal threat. The ruggedly independent who celebrate life, liberty and the pursuit of happiness in the absence of stringent regulation will sacrifice their black and white thinking to help a nephew or niece who has become dependent on drugs or alcohol. Those who consider themselves intolerant of in-equality and weep over those experiencing disparity in health-care or lack of opportunity will often appear to live up to their values until they too fear losing something of greater importance.

 

I have a friend who calls this: “Integrity in the moment”.

 

Since we are tolerant of a change in our own life circumstances to the point of willingness to think in numerous shades of gray when it comes to self-interest and the safety of our loved ones; how is It we cannot apply this flexibility to everyone?

 

My father asked me if I had ever sacrificed. His opinion at the age of 86 was that his was the last generation to truly be willing to have such willingness. He and his friends in WWII who walked from one end of the Philippines to the next risked their lives daily. I always thought this was for God and Country until I learned much-later that my Dad joined the Army –in his words “to find chicks”.

 

So what I consider the truth today is that few human beings are willing to strictly abide by their convictions. Yet, in my opinion; to ease the pain of ‘oneness’ we find some common characteristics that we share with others and join that group: Until we become threatened that is.

 

So, for all of you Republicans, Democrats, Tea Par-tiers; Independents; Christians, Jews, Muslims, Atheists, Agnostics, or (insert category here): Are you willing to try something new?

 

How about belonging to one group:

Human Beings.

 

 

How about owning some truth:

  • We are a fickle species.
  • We are capable of changing our behaviors and attitudes.
  • We are not God if there is one.
  • We believe in knowledge.
  • We believe that knowledge is best obtained through scientific methodology
  • We would like to live forever, never be hungry, never be lonely, and always be loved and recognized as an individual.
  • When we put our defenses down we realize that each one of us will die and we might experience times when if not dead, we will wish were dead.

 

Now, stop here for a moment. Yes I know you have an important business meeting but please stop for a moment and read on.

 

  • If you own these truths you might feel a bit uncomfortable right-now: Perhaps afraid for yourself, perhaps sad for others who might suffer. In fact, all of a sudden you realize that We All Suffer.
  • What separates you from those who you call entitled. What separates you from the arrogant wealthy movie star; very, very little; perhaps nothing at all?

 

 

So on the flight home from Denver, I met a guy who said his nephew had been living a year in North Carolina. He said he had just got a factory job but could not afford his medicine. He said he was a diabetic who did not have his insulin.

 

As my mind jumped between my judgment and intolerance of numerous human character defects; across a spectrum of political beliefs there was a man about to die from diabetic ketoacidosis.  He had lost 50 pounds in weight and for reasons that were none of my business no medicine.

 

I just hung up the phone after speaking with his aunt: I gave her the number of a community health center where the young man can access a primary care medical home and learn –if he desires- to take care of himself. That is the problem in the moment.

 

Realizing that I am one of those fickle human beings described above I needed to stop thinking and do the next right thing.

 

The next right thing will always be: To decrease suffering for another. When I am so sick that I am unable to help another or take care of myself then the next right thing is to?

 

Ask for help!!!!

 

So, as the North Carolina Legislature places health and well-being above all else, they will have my respect. That said, since they are human, and I am a human, if any one of them needs some groceries they are welcome to split what I have in my refrigerator.

 

You see:

 

At age 10 a man tackled my ‘entitled’ drunken mother as I jumped from our kitchen table on-to his back with a steak knife ready to cut his throat.

 

At the age of 13 I said “I will never drink alcohol or take drugs”

 

At the age of 19 I acquired hepatitis C (guess how)

 

At the age of 25 I had to borrow money for insulin (help of another)

 

At the age of 31 I stopped drinking and drugging (help of many and my higher power)

 

At the age of 36 I had asked a team of people to help people suffering with lung disease become more independent and comfortable: Literally healing people into their inevitable death. I did not have to ask: ten years later; the team simply told me how much they loved me.

 

There have been times in my life when others would throw me away and times when they called on me to feel safe. At what point should I be judged by others. Isn’t it our duty to love unconditionally in the moment: To believe in our truth that people change, life is precious and it is not ours to judge?

 

Moving forward NC Legislature, I hope you all will sit back and reflect on the importance of your actions. How many tomorrows are you sacrificing that do not belong to you.

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