All Hepatitis C Patients Deserve Access to Cures

July 28th, 2014 by DCPatient No comments »

Today is World Hepatitis Day.  We should have much to celebrate. Recent FDA approvals have given liver patients and providers medications with 90-100% cure rates with shorter treatment times, fewer adverse side effects, and easier administration.  Three medical societies issued new guidance to assure that physicians were aware of the transformative nature of the new therapies and had the information needed to treat their patients.

 “Hepatitis C can be cured, and today’s drug therapies are very effective and easier for patients to take.”

— Jeffrey S. Murray, M.D. deputy director, Division of Antiviral Products, FDA Center for Drug Evaluation and Research

However, commercial health insurance plans and state Medicaid officials are restricting coverage to the most effective therapies arguing that the price of the medications — $70,000 -$170, 0000 — is too high to pay in the case of a disease with more than 3 million patients particularly in need.

Their calculations seem not to  have taken into account reductions in:

  • costs of treating severe side effects such as anemia
  • costs of treating progressive and advanced liver disease — End stage liver disease patients incur average annual costs of $59,995
  • costs of treating liver cancer ( the #2 cause of cancer death globally) — $112K annually
  • costs of liver transplant — $more than $500,000 to start, and then high annual costs for medication and monitoring
  • absenteeism
  • presenteeism
  • caregiver lost income and other expenses

Their decision also seems not to have taken into account ethics or morality either. Their main argument is that lots of people need treatment.  There is no other infectious, communicable disease that we deliberately choose, as a matter or policy, to not cure.

My only conclusion is that payors have decided that liver patients are not worth treating. They are saying that the grandfathers, grandmothers, mothers, fathers, sisters, brothers with hepatitis C ( 2/3 are Baby Boomers) are just not worth saving.  What are you saying with your silence?

Tweet: #HCVmedaccess4all

Support our  awareness campaign: https://www.booster.com/hcvmedaccess4all

Look for more information coming: www.globalliver.org

Resources:

FDA Consumer Update: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm405642.htm

Payor, not Patient-Focused Narrative  http://www.washingtonpost.com/blogs/wonkblog/wp/2014/07/24/the-drug-thats-forcing-americas-most-important-and-uncomfortable-health-care-debate/

Price Limiting Coverage http://www.bloomberg.com/news/2014-03-05/hepatitis-c-drug-price-limiting-state-medicaid-approvals.html

Disproportionately affects African Americans and the poor http://annals.org/article.aspx?articleid=1834167

 

 

 

Why I Fired my Doctor & What You Should Look For in Yours

May 12th, 2014 by DCPatient 1 comment »

Cross-posted with EHealthEquity News.

I consider myself an activated (Level 4 on Dr. Judith Hibbard’s Patient Activation Measure), engaged (Lifetime Member of the Society for Participatory Medicine), symptom-tracking, official e-patient.

And yet a series of encounters with a primary care physician left me feeling so disempowered, disrespected, and disengaged that I felt like one of the hostile witnesses I deposed when I was a practicing attorney, whose answer to everything was “yes”, “no” or “I do not recall”.

This particular incident underscored the fact that without a patient-provider partnership, there can be no engagement. Sure, I can be activated – ready, willing, and able to learn about and take steps to manage my condition — but without someone to engage WITH – a doctor, nurse, PA, NP, a health system who wants to have a dialog with me, accept my patient generated data, debate treatment options with me until we negotiate a plan that works in my life context – there is no engagement. That’s why I have stopped using the term patient engagement in isolation.

It all started when I let my health system assign me (mistake #1) an internal medicine physician to attempt to provide primary care and play quarterback to my team of specialists.

I assumed (mistake #2) that because I had worked with many of the specialists involved in developing this coordination solution, that they would choose someone, who understood the type of patient I am – high health literacy, married to a doctor, work in health care consulting, involved, engaged, and experienced.

They did not.

Instead they chose someone – or maybe he drew the short straw – who although young in age, had a very old and paternalistic view of the doctor-patient relationship. We clashed in every way.  He would not accept my concise written summary of my extensive medical history. (The folks at NIH appreciated it!)  I guess I was an unreliable witness as well as an increasingly hostile one. He would not accept my blood pressure readings over the phone, which I found very ironic, since, while on the phone, I was editing a report (as part of a technical expert panel on patient-generated health data) for the Office of the National Coordinator for HIT.

He insisted I go to the ER to receive IV fluids, despite my pointing out that the ER is a dangerous place for an immunosuppressed person and not a cost or time-effective manner to administer fluids. Why not a home nurse or send me over to the infusion center if he could not start a line right there in the office? He was not interested in solution-generation. I could go on.

There were many similar experiences during our short time together and the end of the story is that I refused to return to his office and found a doctor who was a better fit for my ‘patient style’. (The chief of internal medicine who I learned was the pick of all the residents who needed a doctor.)

My new doctor and I have similar philosophies about patient care. I respect his expertise and he respects mine. He takes the time to understand my goals, preferences, and values. He coordinates my care to reduce my patient burden, decrease the time it takes to get answers, and make clinical decisions that are pertinent to improving my health.

So what can you learn from my experience? First of, here are two questions you should ask yourself:

  1. What is my patient style?
  2. Do I know the questions to ask, and the things to look in a doctor who fits my style?

Taking the time to find the answers to these questions may not only make the difference between frustration and satisfaction, but also between health and hospitalization.

If you have a great physician-partner consider sending them a thank you note to let them know that you appreciate their approach to your care.

Thoughts? I’d love to hear how you went about finding the right doctor who fits your style. Please share in the comment box below.

Seven Things You Should Resolve to Know More about for National Infertility Awareness Week

April 20th, 2014 by DCPatient No comments »

The theme for RESOLVE: the national infertility association ‘s    @resolveorg  National Infertility Awareness Week #NIAW is “Resolve to Know More”.   Looking back over seven years of trying to conceive, which to be completely honest, only ended recently as I entered, failed to notice, and finished, early (although not clinically premature) menopause all in one fell swoop this winter, there are many things that I wished I had known at the beginning of this journey. Some of these lessons I learned in books (I read shelves-worths), some in magazines (piles), some from my acupuncturist, some from other women and men (friends, strangers, and strangers who became friends) going through or having gone through the infertility experience, certainly some from my doctors, particularly the second reproductive endocrinologist we worked with, and even, bittersweetly, from clients in my consulting practice.  [Disclosure: I am currently consulting for a nutritional supplements company called Theralogix   @Theralogix that I sooo wish I had heard of when it might have changed the course of my journey.]

So in honor of National Infertility Awareness Week #NIAW, here are seven things (one for each day of the week) that I hope you RESOLVE to Know More about:

1. The key connection between age and egg quality

I had heard that pregnancy was harder after age 35, but somehow had thought that because I looked young (I still don’t have a grey hair) that my eggs must look and act just as young. Apparently not so.  As women approach 40 our chances of becoming pregnant each month decline to only about 10%.  http://www.reproductivefacts.org/  I feel that they should pass out brochures for egg freezing at college graduation, but that may just be me.

2.   When to start working with a fertility specialist

Given my complicated medical history, my age, and my husband’s age, we should have run directly to a reproductive endocrinologist straight from the altar. Official recommendations are for those over 35 to seek input from a specialist after six months of trying (twelve months for those under 35). My regular ob/gyn is great for well-woman care and many other concerns, but did not suggest that I seek a specialist until I pressed, and we wasted time in hormonal testing at random times of the month and other literally “unproductive” activities that I can never get back.  When we did see a fertility specialist, he leapfrogged us over several of the usual first steps like Clomid or IUI and we went straight to IVF, the most intensive and expensive, but by that point, medically indicated procedure.

3. The connection between egg quality and nutrition.

Over the course of my time in the “land of IF” I went gluten-free for several months, upped my fruits and veggies significantly and basically followed most diet recommendations found in fertility books at one point or another with no real plan or path, and no sense of what nutritional plan was truly suited to my personal situation and needs.  I also tried Chinese herbs and several versions of nutritional supplements recommended in books and blogs, but had no basis upon which to choose them.  I didn’t know about NSF certification   or where to go to find supplements with evidence of effectiveness and sources where the purity and integrity of the product was assured.  I didn’t know that particular substances like CoQ10 and DHEA in the right formulations can truly help the right patients.

4. The importance and prevalence of male factor

Now my DH (dear husband in fertility speak) has 3 kids and 2 grandkids, so it was not likely that he had issues, although the years may have taken a toll on motility, quantity, and oxidative stress may have caused DNA fragmentation, factors older fathers must consider.  For 30% of couples, a challenge from the male partner was a factor in infertility.   It also just made me feel better with all that I was enduring, to focus for a moment on his eating, vitamins, and health behaviors.

5. The Importance of Vitamin D for enhancing the interplay between egg quality and uterine receptivity.

My husband and I actually produced very few but all reportedly high-quality embryos and it breaks my heart that we lost every one somewhere inside me.  New research has emerged that demonstrates that vitamin D levels can significantly increase or decrease the odds of successful implantation.

It may all start with the egg, as the excellent new book by Rebecca Fett, a fertility patient and molecular biologist, details, , but the journey to a healthy pregnancy is multi-factorial — a miracle — when you think of the nutritional, hormonal, immunological, and physical variables involved.

6. The importance of patience in the fertility journey

At one visit to the fertility specialist I saw a woman laying down on the floor, curled up in a ball.  Everyone else was walking around as if she were invisible. I guess it was hard to know just what the right response was.  I decided to lay down on the floor next to her.  At the beginning I thought that infertility would be like other medical problems I had had.  I would bring them to the right doctor, they would give medicine and/or a procedure and I would be fixed and move on.  I have never been tested more as a woman, as a human being, as a person of faith. One of my best resources was the nurturing and normalizing of the experience with other patients in a mind-body support group offered by my acupuncturist.

7.  What you value most in building a family.

Today there are a variety of options for building a family from donor eggs to surrogates to adoption.  There is no one right answer.  Don’t let anyone tell you there is.  Listen to your heart, listen to your spirit.  I truly wanted my own child – part me, part my husband – and my husband agreed.  When that became no longer an option, my journey ended. I feel a sense of peace with how much I did, how far I went, what I did and didn’t try based on what I knew at the time and the resources – financial, physical, and emotional – I had. My journey as best stepmom (and grandmom), aunt, godmother, mentor, and puppy-mommy ever is just beginning. Be warned, if your child comes anywhere near me I will ply them with toys, treats, jokes, stories, and overwhelming love and fun until they would much rather be with me than go home with boring old you.

Here’s hoping that you end National Infertility Awareness Week not only knowing more, but feeling wiser, empowered, and supported.

 

 

Access to Immunosuppressive Drugs under Medicare Part D is at Risk — Transplant Community Needs to Act Now!

February 12th, 2014 by DCPatient No comments »

New: Congressional Briefings on Preserving & Protecting the 6 Protected Classes Scheduled

Feb 12th — Noon: B340 Rayburn House Office Building

Feb 13th — Noon: Capitol Visitors Center Room SVC 200

The blog is cross-posted with permission from the National Kidney Foundation. Other comments are completely my own.

All those you have been transplanted, are waiting for a transplant, love someone who has had a transplant, donated a loved one’s organs to give the gift of life and want to make sure it is not endangered OR just folks who believe that CMS should not engage in the practice of medicine please read and make your opinion known.

Access to Immunosuppressive Drugs under Medicare Part D is at Risk

Medicare beneficiaries who do not qualify for immunosuppressive drug coverage under Medicare Part B (the Medicare program that covers outpatient care) typically receive coverage of their immunosuppressive drugs under the Medicare prescription drug program known as Medicare Part D.  Under current Medicare Part D protections, organ recipients have access to all approved immunosuppressive drugs. This protection allows physicians to tailor drug combinations to best meet the needs of the individual patients. However, a proposal released by the Centers for Medicare & Medicaid Services (CMS) on January 6, 2014 would eliminate this protection and allow Medicare Part D health plans to restrict access to immunosuppressive drugs.

Without the current protections, Part D plans, not doctors, will decide which immunosuppressive drugs patients can access. This proposal reflects a misunderstanding by CMS that immunosuppression to avoid organ rejection is a one-size fits all therapy. Patients and transplant physicians know that there is no one drug combination that works for every patient. Some patients may experience harmful side-effects with a particular drug combination that might work wonderfully for someone else.  It takes a delicate balance to properly suppress the immune system in order to preserve the organ, while minimizing side-effects for each patient.

Rest assured that NKF is engaged on this issue and is educating legislators and the media about flaws in CMS’s proposal. To date, our conversations with congressional offices are encouraging. We are also reaching out to CMS to help them better understand how immunosuppression works and why it is important to cover all immunosuppressive drugs.  However, we still need your help.  Please email nkfadvocacy@kidney.org and share your story about how your physician was able to find the right combination of medications for you.  Did the first combination of drugs work right away or did you need to try multiple combinations before the right one was found?  Sharing your stories with policymakers helps us grow momentum in order to get CMS to reverse this proposal.

Additional Information:

CMS fact sheet on changes. http://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-Sheets/2014-Fact-sheets-items/2014-01-06.html

CMS proposed rule http://op.bna.com/hl.nsf/id/bbrk-9f4szl/$File/MAJan62014.pdf

Foley Hoag analysis http://www.foleyhoag.com/publications/alerts-and-updates/2014/january/cms-proposes-changes-to-six-protected-class-rule-under-medicare-part-d

Submit comments on www.regulations.gov http://www.regulations.gov/#!submitComment;D=CMS-2014-0007-0002

Learn more about the Medicare Access for Patients Rx Coalition http://maprx.info/

 

Let Patient Safety Guide FTC Decisions on Biosimilar Naming

February 4th, 2014 by DCPatient No comments »

Today the Federal Trade Commission is conducting an workshop to determine, in part, if follow-on versions of biologic medications will have the same name as the original versions of the medications or if they will be designated by a distinguishable name or code so if there is an adverse event the doctors, patients, and regulatory agencies can track back and find the responsible product.  They would still be on the market, still be (presumably) at a lower cost, but just not able to hide.  What do you think?

Below is a link to my views in a conversation with  former Asst. Commission of FDA, Peter Pitts and a blog post from the Alliance for Patient Access which includes a letter signed my major patient associations.

Drugwonks Interview: http://drugwonks.com/blog/patients-are-a-virtue-but-not-at-the-ftc

Blog Post from the Alliance for Patient Access

By Brian Kennedy, Alliance for Patient Access

As a representative of an organization that advocates for greater patient access to approved therapies and appropriate clinical care, I am hopeful that when biosimilars are introduced into the U.S. market (later this year or early next), patients nationwide will have increased access to certain life-altering and life-saving treatments. It’s disappointing though that the Federal Trade Commission (FTC) is driving a discussion about market access and competition for biologics and biosimilars this week, yet they left important perspectives – namely patients, providers with experience prescribing biologics, and health system pharmacists – out of that dialogue.
While the U.S. Food and Drug Administration (FDA) – not the FTC – ultimately sets federal policy around the approvals pathway for biosimilars, any public discussion driven by a federal government agency is going to get attention; because of the FTC’s omission of these important perspectives, the Alliance for Patient Access (AfPA), along with the California Healthcare Institute (CHI) and thirteen other health advocacy organizations, signed a letter that has been submitted to the FTC and urges that patient safety and consumer protection be at the forefront of the FTC’s considerations, particularly when discussing the issue of the naming of biosimilar products.
Before approving biosimilars in the U.S., FDA will first need to establish naming policy for these products. Given the vast differences between chemical compounds and biologics – including biosimilars, the FDA should require distinguishable names for all biologic products, rather than requiring biosimilars and their innovator reference product to share the same name.
Patients across the country will be best served if distinguishable names are required for all biologics. By providing clarity of which medication is being recommended at the point of prescription, distinguishable names facilitate the process of determining the cause of an adverse effect and allowing patients and their medical teams route back to the origin of the problem. Issues that may be particular to a specific biological product may even be entirely untraceable without distinguishable names or other distinct identifiers.
Accordingly, through the way it sets naming policy, FDA can provide the best possible protection for patients, while simultaneously ensuring the highest credibility for biosimilars as they enter the marketplace.

Original Post and letter: http://www.allianceforpatientaccess.org/health-advocacy-organizations-submit-letter-ftc-regarding-biosimilars-naming-policy/

FTC Workshop  on Competitive Impacts of State Regulations and Naming Conventions Concerning Follow-on Biologics: http://www.ftc.gov/news-events/press-releases/2013/11/ftc-host-workshop-competitive-impacts-state-regulations-naming

 

Lessons in Patient Advocacy: Getting Off to the Right Start

January 5th, 2014 by DCPatient No comments »

Like many patients and patient families who have lived with a serious or chronic condition for a period of time and have arrived on the other side of the shock of diagnosis, the confusion of new terminology, and the arduousness of treatment I came to the point in my journey when the decision presented itself – try to go back to living the life before or reorient my life to figure out how to help other patients. Neither decision is wrong, in fact, I have tried living a life where there was no reference to my medical conditions, but that just never seemed the right choice for me, for my purpose and place on this planet.

For almost two decades now I’ve worked in healthcare, primarily working for, with, or advising others how to work for or with patient advocacy organizations.  This year I am embarking on something new, and I’d love for you to go with me.  I am launching a new nonprofit, building it from the ground up.  Over the course of this year I will write about my process for creating a patient advocacy organization, the sources I use, the best practices I leverage, and the lessons I learn from my inevitable mistakes.

And I’d love to hear your thoughts from your own experience, in fact I make an urgent plea for them!

Lesson 1: Am I filling a need? Am I the best person/organization to fill it?

I’m not the first patient to think, “I’ll start a foundation!” However, we all know what road is paved with good intentions.  There are thousands of health-related 501(c) 3 organizations, most quite small.  Some do amazing work.  Some though, if we were to be honest, do not accomplish much and create confusion in the disease landscape, and steer resources from other organizations which are or could actually make a real impact.  So my first step in creating a new patient advocacy organization was to try to have people talk me out of creating it.  I asked as many different types of stakeholders in the relevant disease state – other patients, clinicians, researchers, companies, and people who knew nothing about the disease – the same questions:

  1. What is most needed in this space?
  2. Is another organization planning or equipped to meet this need?

In my case (and yes in future posts, I will tell you what disease), I was told repeatedly (and in some case emphatically) that there were no organizations that were poised to meet several crucial and clear needs to advance the field and improve the lives of patients and there were specific ways that my background, experience, connections and expertise matched those needs.  My choice is not an indictment of other organizations.  It makes a lot of sense to focus on developing a particular expertise so that one organization may end up being the go-to for support, another for research funding, and another for advocacy.  Where problems arise is where there is mission or operational overlap and an organization is not providing a unique value to the community. If the answer had been otherwise I would have joined one of the organizations.

Too few patients/patient families go through this step, or  are willing to put ego aside if they do, resulting in unnecessary fragmentation of the advocacy landscape.   In fairness, some patients/patient families are also rightly turned off by the bureaucracy or staff capture of some of the larger organizations and want to make sure that their efforts and dollars are used in a highly specific way or more directly on patients.

Question 1: Why did you start your organization? What specific need were you trying to meet?

I look forward to this dialogue throughout 2014!

Thank you,

Donna

A Patient Summer

September 3rd, 2013 by DCPatient 2 comments »

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.”  Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.”

–          2 Corinthians 12:9

 

I have had an unusual summer, at least for me.  I took time off.  I unburdened myself of most work and all volunteer obligations.  Reset my family expectations of me (and mine of myself). I would like to say that wise acknowledgement of the need for life balance led me to this place, but in fact I had no choice.  After a spring of declining health and a hospitalization, I needed to focus on regaining my strength and rebuilding my health.

Thanks to my hematologist/oncologist, who, because he deals mostly with cancer patients seems more focused on supporting patients through treatment in a holistic way than my other doctors, set me up with home nursing care including IV fluids and iron, I was able to function again while waiting for my new biologics to start kicking in.  I cannot say enough good things about home health care – attentive, responsive, convenient, safer from an infection control standpoint, and much more cost-effective.  The two months of home health cost me and my insurance company less than $500 compared to the $7,000 that the 1.5 days in the ER and “observation room” in the hospital where I received the same interventions.

Of course, as a recovering patient advocate, now feeling a bit more spry, although slightly limited by my midline catheter for prolonged IV access, and with time on my hands, I could turn my attention to reforming the system that landed me, a highly activated adherent patient, in the hospital in the first place.  Thank you to everyone who read my May 14 post, Cumulative Burden.  Consider this the next chapter.

I wrote a lengthy letter to my hospital, detailing (respectfully) my specific concerns about safety, infection control, HIPAA violations, access and use of data, and communication loops, with my recommendations, and after giving my gastroenterologist the courtesy of reading it first, I hand-delivered the letter to the chief of medicine and the heads of transplant and GI. And then I waited, and waited for a response that never came.

Ok, so the first letter I had started “as an unsatisfied patient of your GI, transplant, and immunology services . . .” The second letter, sent after being ignored for 35 days, began, “as an attorney with a significant social media presence . . . I will require your response on [date] by 5:00 pm EDT”, and was sent to the CEOs of the hospital and hospital system. That got a response.  Why, though, did it need to go that far?  And aren’t they lucky that I was (and am) more interested in collaborating to improve care for myself and other patients than in exposing and shaming them for shoddy care?

Note to hospital execs: If you get a letter like this.  Answer it! Pick up the phone and call the patient or patient family member who took the time to write and gain a potential brand ambassador (and avoid a potential lawsuit and PR crisis to boot).

With this new  dialogue, we have been able to establish the following:

  1. Yes, I was put in the “observation room” inappropriately given my immunosuppression status and need for bathroom access.
  2. Yes, the way that the “observation room” adjoins to the resident’s conference room where they are putting together treatment plans for all the patients on the floor does pose HIPAA problems since the patient in the “observation room” can hear everything.
  3. Yes, I could have been admitted directly to the floor, saving the ER costs and infection exposure.
  4. No, there are no patients on the board of the hospital or hospital system. (That will have to change.)
  5. No, there is no patient and family advisory council, although there was just a launch meeting to develop one. (Yes, I do plan to be on it!)
  6. Yes, a new patient advocacy VP has just been hired with experience from the hospitality industry as well as a hospital background. (I will be meeting with her in October.)
  7. Yes, we can find a way to bring all my doctors together in one place and time to discuss an integrated care plan for me. (This is scheduled for next Monday so stay tuned.)

So as I face the fall, this post-Labor Day concentration of activity until Thanksgiving, healthy enough to win the Tour de France (no yellow jersey for me, though, given the load of banned substances flowing through me), I take with me from this summer a few lessons:

–          Just say no. It is ok to take a step back to be able to take 2 steps forward.  Everything will not fall apart if I say no to commitments for a while.

–          Patient advocacy begins at home.  I need to press my medical “team” to work better together and not be satisfied until we have optimized my health, not simply accept being out of crisis or functioning ok.  Home health may also need to be a continuing option and I am not ashamed to use it if I need it, rather than soldier on suboptimally.  Only when I am in great health can I be of great use to the larger patient community.

–          Don’t take no for an answer. If the system does not work for a patient like me, it is certainly not working for other patients with fewer financial, time, or health literacy resources.  Once I stopped glossing over the gaps in care (because my physician husband and I could fill many of them ourselves for me and I wanted to move on to do other things) I was able to see how to truly be helpful to other patients at my institution and respectfully, I cannot let the doctors and hospital execs refuse to change and improve or slow-walk the process. Its time has come.  People’s lives depend on it.

Cumulative Burden: The real barrier to adherence for complex patients?

May 14th, 2013 by DCPatient 8 comments »

Cumulative Burden: The real barrier to adherence for complex patients?

Or Confessions of an Engaged Patient

Recently I participated in an excellent meeting whose primary theme was patient adherence. ( Patient Summit USA 2013  ) Thankfully the other speakers, whether they were from pharmaceutical companies or solution providers had all moved beyond the notion that “patients forget to take their medication” and that adherence can be solved by fancy pill caps or bottles; yet I was struck after many small group conversations that we had not yet gotten to the point of where we appreciate the total adherence picture for a patient, particularly those on multiple therapies, possibly for multiple conditions and the fact that adherence to an integrated lifestyle of disease management, not just to taking medication is a necessary predicate for successful health outcomes.

I had even more time to think about this after a few days in the hospital last week due, not to non-adherence to my prescriptions (of which I only had two for much of the past few years), but to non-adherence to an integrated, multi-factoral lifestyle plan (there wasn’t one) and resulting unsustainable deterioration of health.

Mind you, the usual suspects of non-adherence — literacy, numeracy, health literacy, language, “patient activation” are not issues here.  The true culprits in my case, and for many other patients juggling serious health conditions with full lives, were communication, time, focus, discipline, ability to outsource tasks (money, support network), physical accessibility (travel-friendly habits and tools), and fatigue (physical and mental) from the sheer number and diversity of health tasks my conditions necessitate – cumulative patient burden.

Here is a list of what I am doing so as to avoid another overnight stay in my friendly neighborhood academic medical center.  Note: I have active Crohn’s Disease and am post- liver transplant.

 Must do (daily):

  • Take  1 prednisone (before 9am)
  • Take  3 prograf (2 times/day)
  • Take iron (3 times/day) figure out most absorbable form – liquid, liquid cap
  • Drink at least 80 oz of fluid, the majority of which in the form of osmotically appropriate (Gatorade, Ensure clear) drinks, not just water since I have no colon and thus absorption issues
  • (1)Shop for, (2)plan, (3)prepare and (4) eat 4-6 small meals which include cooked vegetables, specific bulk producing fruits, low fiber, low/no dairy, low fat, medium protein (ok I get my groceries delivered, but figuring out what to eat and finding time to cook and eat are still challenges, particularly when I am travelling)
  • Record symptoms in mobile app (8-10 times per day) otherwise we have no real basis to ascertain if any of this is working

Must do (non-daily):

  • Schedule appointments for bloodwork (I often avoid this by walking in to a nearby Labcorp)
  • Travel to appointments for bloodwork
  • Schedule appointments for arenesp shots
  • Refill and schedule delivery of Humira pens (new)
  • Be home to receive shipment of Humira which needs to be iced (new)
  • Take Humira on schedule (“luckily” having gone through IVF, subcutaneous injections are not a problem)

Important to do: (you might say these are must do as well, and I agree, but if I had to triage . . .)

  • Take multivitamin
  • Take calcium
  • Take fish oil
  • Take vitamin D3
  • Take B-vitamin
  • Take Zinc
  • Take Magnesium
  • Drink powered fiber mixed in water
  • Schedule follow up appointments with doctors (primary care, GI, transplant, immunology, dermatology, orthopedics, hematology)
  • Prepare for and travel to appointments with doctors
  • Get additional tests and procedures – (1) schedule (2) prepare (3) travel (4) participate
  • Colonoscopy (1-2/year)
  • Pap (1-2/year, follow up for abnormal)
  • Mammogram
  • Dexa
  • X-rays or other imaging (variable, usually 2-3/year of some sort)

Nice to do:

  • Exercise (BMI of 20 and I take the stairs, so don’t judge)

Life must dos:

  • Work
  • Spouse
  • Friends
  • Family
  • Pets
  • Sleep
  • Personal maintenance
  • House ( I believe a clutter-free environment leads to peace and productivity)

Nice to dos (admittedly seldom dones):

  • Anything fun that needs planning on my part

Sometimes some of the important to dos and even the must-dos don’t get done because doing them all starts to feel like my life and not something to do to facilitate my life. Too much focus on the disease becomes unsustainable after time (what I can do for a week, month, or 6 months, is not usually the same as what I can psychologically sustain over 30 years (since by initial IBD diagnosis).  Also, I have to be pretty healthy to accomplish all of these things, creating an unvirtuous cycle when I am tired. Joy-giving activities form my identity as a person, not just a patient, and in that capacity supports my health as well – they give adherence a point.

My thoughts on solutions?

Note: this is not about education, this is about coordination, process and strategy

  1. Physician communication –with each other, rather than passing me from place to place and looking at me organ by organ or problem by problem. Act as a true, if virtual, medical team.
  2. Physician communication – with me. Clearly my doctors were not listening or paying close enough attention to how quickly I was declining and the toll the symptoms were taking on me in the appointments I had in the past 2 months. Were there additional pieces of information or ways to articulate my symptoms that I could have given them?  We lacked clarity in establishing what an appropriate baseline for wellness was for me and what would trigger action.
  3. Share data – I am a one woman HIE. Even with doctors in the same institution there are gaps in the exchange of data from outpatient offices, inpatient, and imaging.  There seems to be no alerts or analytics applied.  (Why did I have to raise my hand and proactively seek out hematology when my hemoglobin dropped to 8.3?)  Reports from external physicians and my condition-specific mobile app are difficult to integrate into the workflow for consideration.
  4. Integrated lifestyle plan – Note I do not say treatment plan. I had to put the plan above together myself and I doubt that my doctors will give it much more than a nod.  I do need them to sign off.  It would have been great to have had more involvement from them collectively in developing it.
  5. More frequent micro-interventions –I would have benefited from a bag of IV fluid from time to time to avoid major, kidney-threatening dehydration later, or some IV iron and keep me fortified to keep up with the other health maintenance tasks.  I would like to see more of an emphasis on optimizing my health rather than just putting out fires.
  6. Streamline appointment process and number of appointments – Think of each of the things that I have to do, then add multiple attempts to do them. I would love for multiple appointments and procedures to be bundled and scheduled on the same day.
  7. Travel versions of everything – Taking this show on the road is my biggest challenge, so I have been stocking up on non-ecofriendly bottled and  juice box size versions of therapeutic fluids and stashed them in purses and suitcases and I will work on eating.

So I was taking the meds I was prescribed as prescribed and still ended up in the hospital.  Patient adherence discussions that are limited to blister pack containers for one product in pill form or swipes at patients who are not 100% adherent to a drug regimen “even when they have a serious or life threatening condition” are woefully insufficient in understanding, let alone addressing, the true barriers to adherence – patient-physician interactions, polypharmacy with differential timing or conditions, and cumulative patient burden.

See  also Non-compliance and minimally disruptive medicine expert Victor Montori, MD, Mayo  Clinic NonCompliance by Victor Montori, MD

http://minimallydisruptivemedicine.org/

Innovative Patient-Controlled Registry Invites Liver Patients to Engage

April 5th, 2013 by DCPatient No comments »

See Video:  Patient-Centered Drug Discovery in Liver Cancer

Help Me Spread the Word!  Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Today (April 5, 2013)  I am honored to present at the 3rd Annual CanLiv Research Symposium on Hepatobiliary Cancers, on the topic of “Putting Patients at the Center of Drug Discovery”. CanLiv is a vibrant and vital organization in the liver community, founded by Dr. Melanie B Thomas, Associate Professor, Associate Clinical Director of the Hollings Cancer Center and Grace E. DeWolff Professor of Medical Oncology at the Medical University of South Carolina, to support patients with liver cancer and catalyze new research.

Liver cancer or hepatocellular carcinoma (HCC) is the 5th most common cancer in the world and the 3rd leading cause of cancer death.  Unlike many other cancers in the U.S. liver cancer rates are rising. Yet there is only one FDA-approved medication for liver cancer, sorafenib (nexavar), although for some patients surgical or radiation therapies are appropriate.  Clinicaltrials.gov indicates that there are 741 liver cancer studies currently recruiting patients.  One of the largest limiting factors for finding additional treatment alternatives are the low number of liver cancer patients who are participating in clinical research. Only 3-4% of cancer patients and 1-2% of liver patients participate in clinical trials.

I’d like your help in transforming how patients are involved in clinical research. I want to see participation in clinical research, as agenda-setters, outcome-selectors, study-designers, as well as subjects, become the norm for patients in liver disease ( and all conditions!).  One of the new tools to help do this is Registries for All (Reg4All), www.reg4all.org , a novel patient-controlled online platform for sharing health information with researchers and each other developed by respected non-profit patient advocacy organization Genetic Alliance .  It has already won awards  and started to hit tech publications. http://www.technologyreview.com/news/512456/new-disease-registry-gives-patients-some-privacy/

Most people think that registries are only for bridal or baby shower gifts, but registries, repositories for identified and de-identified health information, have the potential to accelerate the research process.

Reg4All is unique because:

¨  Permission to search, discover, access, use and share any data in the registry is 100% participant-controlled

¨  For all individuals – healthy and all conditions (most registries are siloed and of limited use to someone like me with multiple conditions)

¨  Entering information is fun, instead of tedious due to a gamified survey powered by Traitwise®

¨  Each participant controls his or her information through dynamic granular sharing settings – who, how, when and if data is shared thanks to PrivateAccess™ technology

¨  With the individual’s permission, this data is searchable by researchers in real-time through RecruitSource

Liver cancer, and liver research in general is in need of innovation.  My vision is that it can be transformed from the inside out by patients who are active partners in driving that innovation. Reg4All only realizes its potential if patients embrace it.

¨  Empowering  liver patients by valuing patient-generated health data

¨  Engaging liver patients by providing real-time feedback on comparison to others

¨  Entrusting patients with control over if, when, how, and with whom their health data is shared

¨  Representing the whole person rather than individual conditions and disease states (GI, Liver, Immune, Cancer, Biomarkers)

¨  Enriching and enlarging pool of patients to accelerate recruitment through community participation

¨  Reducing frustration and complexity of finding trials

Please help spread the word, particularly to patient advocates, liver and liver cancer patients.  Mention Reg4All in all of your communication vehicles Friday and moving forward.

Thank you!

Twitter:

Liver pts take control of your health data to speed health breakthroughs, B discovered 4 clinical trials.  www.Reg4All.org #Reg4All #CanLiv

Facebook/Online Communities:

Friday April 5th patients and family members living with liver disease are invited to try Registries for All (Reg4All) to share their health information, discover clinical research opportunities, and speed innovation in drug discovery for liver diseases.

Reg4All is unique in 2 ways:

1. It operates across all health and disease conditions. (So more likely to identify research opportunities from correlations between IBD, CF, liver disease, and liver cancers)

 

2. Each participant controls everything about their information– what they store, what if anything they share, with whom they share, for what purposes that information may be used– everything.

 

Visit www.Reg4All.org

 

Newsletter/Blogs:

Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Speeding up the pace of innovation and new drug development is vital for individuals with liver disease.

Research seeks to discover safer, more effective, or easier to tolerate treatments and therapies – therapies that may improve prolong or save your life or patients like you.

Research can’t happen without patients willing to learn more about clinical studies and choosing to participate in studies that are right for them.

As a liver transplant survivor and the former president of the American Liver Foundation, I am excited to partner with Genetic Alliance, a national non-profit advocacy association, to promote a novel solution that makes finding and being found for a clinical trial easier — Registries for All (Reg4All).

If you or a loved one has liver cancer, cirrhosis, hepatitis, and other forms of liver disease, please explore Reg4All so we can all help each other.

Reg4All features TrialsFinder which provides a new, effective way to match individuals who are willing to participate in research with researchers looking for them.  Our top priority is helping you to find research projects that are useful you, making it easy for researchers to find you, while allowing you to control how, when, and if your information is shared.

Please join us in this by visiting www.Reg4all.org

Portal Hypertension

March 20th, 2013 by DCPatient 3 comments »

I have to admit, I was like Ralphie in the movie A Christmas Story, when he finally received his Little Orphan Annie decoder ring in the mail after a long wait and much anticipation, only to find out that the secret message was to “Drink your Ovaltine”.

Such was my let down when after finding out, only through passing comments by one of the physicians I am friends with at the hospital where I receive most of my care, that there was indeed a patient portal at the institution [Comment 1: if you have a patient portal please tell patients about it] and finally receiving a PIN number to gain entry, and working with the helpline to find out that I must enter my name in ALL CAPS because that is how it is in my patient record at the hospital [Comment 2: random case sensitivity not mentioned in the instructions, unnecessary barrier to use] I  accessed my patient portal to find – NOTHING!

Ok, almost nothing.  After being a patient at this institution for 6 years, seeing primary care, GI, transplant, having multiple labs, procedures, imaging, and being an inpatient there was the following information available to me:

  • Four (4!) values under general health – 1 blood pressure reading from December 2012 and 3 lipid values from June 2008
  • My medications list
  • My immunizations

That’s it!  Hello, where’s my data?  [Comment 3: The whole point of a patient portal is to have access to all the information about me (including the notes, see OpenNotes project ) in the EMR of the hospital and associated practices.] That not just my hope or opinion. When I finally got my hands on a marketing brochure for the portal they describe themselves as, “your direct link, via your personal computer, to the electronic health record your doctor creates and maintains for you.” It further states that, “Your entire paper patient record file is now stored digitally in a safe, secure environment.” If my doctors only have 4 values, a list of medications, and immunization records upon which to make clinical decisions about me then I am in big trouble.

As for other features – request an appointment and request a referral are really just secure emails that the fine print mentions may take 2-3 days to be returned.  I might as well just call. Actual appointment scheduling, alerts to upcoming appointments and allowing me to fill out the forms in advance of the appointment would be worth my time and very helpful to both patient and provider efficiency.  The renew prescription feature is limited, certainly nothing to make me give up the auto-refill and auto-renew offerings from CVS/Caremark’s website.

The final indignity is the request test results feature – JUST SEND THEM!  Why should I have to specifically recall and request each lab, procedure, and test result?  Also, I couldn’t even if I wanted to because only one of my doctors is listed.  Indeed, Meaningful Use objectives include providing patients with timely electronic access to health information within 4 business days of that information being available to the provider. Start with uploading the clinical summaries if that’s all you can handle right now, but 4 values over 6 years of data is inexcusable.

The Frequently Asked Questions section (my real questions are truly just WTF and why did you bother?) explains that this portal is not intended to be a PHR. The option is given to upload this information into my Microsoft HealthVault account.  Not much use if there is nothing to upload.

The FAQs also say, “no”, literally, to being able to view, share, or help manage your family members’ records. [Comment 4: Access by parents, children of seniors, or other caregivers is one of the top reasons that people would derive value in using a patient portal]  The marketing materials, however, state that, “you may choose to share your lab results and other information with a family member you want to help manage your care.” You just can’t do it here.  Well you can if you give your caregiver your ID and password, but they don’t mention that.

The rest of the site is health education and risk assessment tools and information on the various hospitals in the system. [Comment 5:  Risk assessment tools are more useful if you populate the risk factors from my record and I would be more willing to look through your propaganda if you had met my needs first].

In sum, I have seldom in my life experienced such great disappointment. This portal is more like Sarah Palin’s Bridge to Nowhere.  I know the technology, the policies, and the incentives exist to create and operate a useful patient portal. My institution just chose not to.  This says to me that activating, engaging, or empowering me is not important to them.  Fortunately, I am activated, engaged, and empowered enough to go elsewhere.