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Leader

$35 or $30,000 (I think) for a lifesaving drug

By | Advocate, ePatient, Leader | No Comments

Who benefits from the murkiness of finding the prices of prescription drugs? Clearly not patients and caregivers.

Today, I’m taking two potentially lifesaving drugs – azithromycin and rituximab.

According to GoodRx.com, azithromycin, prescribed for my pneumonia, has a cash price of $35 with a $10 copay cost to me.  Took me 10 seconds to find this.

I’ve spent more than four hours and I still don’t know how much the rituximab, a chemotherapy infusion for my multiple sclerosis, costs or will cost me. I’m turning 65 next week and I need to select a Medicare Advantage Plan. I spoke with several insurance companies. None can (or will) tell me the cost of Rituximab to them or to me. They differ whether it’s a formulary drug (covered at all). They differ whether they consider it a drug covered under Medicare Part D (see below) or an infusion, covered under Medicare Part B. If Part B it may be included in my premium.

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Bad experience? Now what?

By | Advocate, Caregiver, Consumer, ePatient, Leader | No Comments

I read a post this week on the Society of Participatory Medicine’s blog about a nightmare attempt to obtain medical appointments as new patients. You’ve faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting, waiting, that the author describes.

I’ve dealt with it, too, as a patient, caregiver, clinician, and quality management leader. So, how do health care clinics and insurance companies know about the challenges their patients/customers live through? The most common is through surveys. Surveys are blunt (not sharp) and fairly useless. Most health plans require clinics to administer the CGAHPS Clinician and Group Survey. Three questions on the survey include:

  1. Patient got appointment for urgent care as soon as needed
  2. Patient got appointment for non-urgent care as soon as needed
  3. Patient got answer to medical question the same day he/she contacted provider’s office

You can answer Never, Sometimes, Usually, Always.

Most health plans survey patients about health plan service:

  1. In the last 12 months, when you needed care right away, how often did you get care as soon as you needed?
  2. In the last 12 months, how often did you get an appointment for a check-up or routine care at a doctor’s office or clinic as soon as you needed?
  3. In the last 12 months, how often was it easy to get the care, tests, or treatment you needed?

See, not very informative. A score might be more than 80% of patients say Usually or Always? That could mean that 19 of 100 people responding are unhappy with their experience. Wow. How can anything be changed based on that result? Read More

Cinderblocks4 – Medical Advocacy at its Best

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher | No Comments

 

Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate to solve local problems that matter to them.   50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample: Read More

Calling All Advocates – Health Hats Interview

By | Advocate, ePatient, Leader | No Comments

You know I love stories, telling and listening. Especially stories of people on a rough health road who take the fork to advocacy and community organizing. Advocacy and community organizing isn’t for the faint-hearted. It’s a tough business. Passion and lived experience are necessary, but not sufficient. Advocacy is a struggle. We need lessons learned from advocacy experts. Read More

Resist, Fund Me, Change, Join, Decide, Click, Lead

By | Advocate, ePatient, Informaticist, Leader, Researcher | 3 Comments

 

The pervasive drumbeat of Calls for Action in healthcare overwhelms me, excite me, bewilder me. I’m wired for action. I have to listen and consider or shut it out. I have no middle ground. There’s a limited amount of gas in my tank. I feel protective of my retirement dollars. And I still need to take out the garbage and do the laundry. Do I want to respond? Am I able to respond? What am I really responding to? How much is enough? Does it align with my mission? Will it be fun? Read More

March Madness – TrumpCare

By | Advocate, Consumer, Family man, Leader | 2 Comments

I’m not following March Madness this year for the first time since we bought a TV in 1985. We ended cable this year (that’s another health story for later). Rather, I followed the suspense of the failed enactment of RyanCare and TrumpCare. I silently cheered at my seat in DC while reviewing PCORI Palliative Care funding requests.  My elation lasted all of five seconds. I can’t ignore that Ryan, Trump et al still want to end funding for Meals on Wheels, housing subsidies, and home energy supports. We know that even with the best-subsidized insurance, a person who can’t get enough food to eat nor heat their home, nor afford a home can’t benefit from great medical care. These social determinants of health (or living life if you’re not a researcher or policy maker) impact health as much as, if not more than, medical care. Read More

Coalition for Compassionate Care of California

By | Advocate, Caregiver, Clinician, ePatient, Leader, Researcher | One Comment


I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about end-of-life conversations; to add to my network of patient/caregiver experts; and leave with a sharper focus for my #careplanning work. Amazing! I accomplished all five. I hoped to accomplish three of five (I habitually set myself up to exceed expectations). Read More

Community Rocks

By | Advocate, Caregiver, Consumer, ePatient, Family man, Leader | No Comments

I’m preparing to attend a California Compassionate Care Coalition palliative care conference #cccc17 in a week. I’m reminded of the power of community in advancing good health practices. I have two stories. The first is about the ongoing public health collaboration since 1993 in LaCrosse, WI to meet and sustain very high rates of advanced care planning and following documented preferences through end of life.  A group of people organized a region-wide initiative to elicit, understand, document, and honor a patient’s preferences about future medical care. As a result end of life preferences are a regular part of community conversation, documents became easier to understand and use, some electronic medical records facilitated access to choices, and following the choices became standard practice. In 2010 90% has a plan, 99% were available in the medical record, and 99.5% of the time treatment was consistent with preferences. (See the Journal of American Geriatrics Society).  Amazing! Read More