Monday, April 18, 2016

What Does a CLL Patient and Advocate have in Common with a Diabetes or HIV or RA or Psoriasis Advocate: Plenty

What do patients with HIV or aggressive autoimmune arthritis or inflammatory bowel disease or diabetes or cancer or mental illness or psoriasis have in common other than a difficult time with a chronic disease?

Turns out quite a lot if they are also patient advocates.

I have just returned from the 2nd HealtheVoices Conference where 90 plus online patient advocates from around the world and representing a wide range of patient communities met to learn from each other and share best practices and common challenges.

The conference was a chance to reconnect with other e-advocates, meet new friends, and get out of my CLL (chronic lymphocytic leukemia) silo. I am deeply grateful to Janssen and Everyday Health for their sponsorship of the gathering. 

What follows is a few reflections formed from the conference and my life online for the last 8 years.
Patient advocates tend to be found in chronic diseases.

Although many acute illnesses may be treated sub-optimally and there can be controversy in terms of what is the best therapy, most of us either simply recover from our short-term illness or it is our terminal event. Either way, we are usually no longer involved in advocacy because we have moved on, be it from not worrying very much about a disease we can only see in the rearview mirror or from having departed this mortal coil altogether.

In one case we don’t care, in the other it’s too late.

This is no joke.

As a lighthearted example of the first circumstance, I can find no advocacy organizations or bloggers dedicated to lightening the load of the sufferers of an acute and painful sore throat. Sure, we can get plenty of advice online about symptom control for our pharyngitis and we can read guidelines about when to and not to use an antibiotic, but generally the issue is moot in about a week and half. There is simply not enough sick time to generate any sustained long-term passion.

The bigger and much darker issue is that advocacy organizations are usually filled with patients who suffer from the diseases themselves. Sadly, we patient advocates can and do get sick and die. Hence much of the advocacy work in the diseases that too often offer a short leash such as pancreatic or brain or esophageal cancers is either not by the handful of the brave survivors who beat the odds or by surrogates for the cancer fighters such as family and caregivers touched by the disease. Just as history is written by the winners, advocacy is done by the survivors. As a result, the diseases with the worst prognoses often have the fewest online resources. 

We are luckier. The first thing most patient advocates with HIV or diabetes or CLL usually have in common is time: time to consider options and shop doctors and therapies. Please check out the CLL Society’s short welcome video on that topic and more found in the bottom right corner of our opening page.

Many of us will do our doctor and treatment shopping online, so we look to reviews of other authentic health care consumer that have “purchased” the therapies that we are now considering. Patient advocates with a deep social media reach will jump to near to top of our search lists.
Another thing we usually share is being confronted with many choices. There are a dozen possible treatment options for rheumatoid arthritis (RA), but none without its side effects and risks. There are a myriad of ways to control diabetes. Not one approach is clearly best for all. Care for all CLL patients should be individualized based on a huge web of personal and disease state factors. What flavor of RA or diabetes or CLL do you have?

We ask our doctors to throw out the cookbook approach to care and treat the person in front of them. 

One size does not fit all.

The same holds true for most every chronic disease. We advocates want to get out the information to our fellow patients to support their decisions. We can provide real life and sometimes real time practical tips and handholding when needed.

And once decisions are made, we fight to make sure that everyone has access to their best options.
We advocates all work hard to provide some combination of support and information and practical experience and finally access to the best personalized therapies.

And we are all subject to the reality that we have limits. We can get tired. We can get sick. We can get overwhelmed.

Another thing we patient advocates share is the risk of burn out or compassion fatigue. This is hard work, relentless work, often unpaid or under paid, where the demand always exceeds the supply.
No wonder sessions on compassion fatigue are the highest rated at bloggers’ conferences such as the 2nd HealtheVoices Conference.

Ultimately, we are united by our drive to help, to make a difference in our fellow patients’ lives.

So we patients who are patient advocates do indeed have much in common.

Stay strong.

We are all in this together.


Volunteer Medical Director


Janssen Global Services paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.

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April 18, 2016 at 7:44 PM  

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