Be an Advocate: National Patient Congress and NEK Advocates' Alliance

Happy to share the following posting from our guest blogger today, Kathe LeBeau of Northeast Kidney, on the National Patient Congress and becoming a patient advocate.  Please consider joining the NEK's Advocate Alliance, and be in touch with Kathe at kathe@healthykidneys.org or call 518-458-9697 ext. 2:

“Where you live and how much money you have should not determine whether you live or die…”

These words, spoken by a cancer survivor at the beginning of two days of advocacy meetings and Capitol Hill visits, were among the inspiring messages shared by attendees at the National Patient Congress this week in Washington DC.  Sponsored by the National Patient Advocate Foundation and Patient Advocate Foundation, people dealing with a variety of chronic and acute illnesses and conditions and many family members, shared their amazing stories with Congressional representatives and their staffs to help illuminate the changes needed in health care policy at the federal level.

The experiences of living with illness and the vagaries of care received make for very poignant testimony as legislators try to help make cost effective health care decisions that will serve to drive improvements in that care.  You all know what I’m talking about – you know what it’s like to sit in that dialysis chair, to have your drug regimen changed and changed again, as you struggle to pay sometimes high co-insurances for those medications, you feel alternately well and unwell, and you work hard to make that heard and understood by your medical providers.  This takes that conversation to a different plane; these people at the highest level of government who represent you need to hear your stories so they understand what it’s like to live with a chronic illness like kidney disease for someone like you or me  – or for that matter, for anyone living with Hiv/AIDS, multiple sclerosis, diabetes, arthritis and so on.  They are the ones who make the regulations about how care is provided and paid for – and so ultimately, how well you are able to access and receive that care, and how good the quality of that care is. 

So in DC, with virtually every spectrum of those receiving ongoing medical care – and every single state in the country represented – we met, talked about the issues we all share and then descended on Capitol Hill with the message: we know what it’s like to live with a medical challenge – and this is what you can do to make a positive difference in our lives.

Each of us - almost 100 strong in total from across the country - had somewhere between 10 and 30 legislative office visits each, depending on our state delegation.  And at the end of the day, we returned to our hotel tired and with achy feet, but inspired by the feedback we received.  We were able to develop relationships with our representatives, got some of them to cosign onto bill proposals, and encouraged others to become patient champions. 

We also had incredibly moving presentations as a group: from Rep. John Dingell of Michigan, who has been in the House since the 1950’s – and introduced health care reform legislation every single year he served until it was signed into law in 2010.  We heard from Sen. Max Baucus, who helped work through difficult bipartisan compromises to shepherd that law to passage.  And from Dr. Cary Presant, who wrote “Surviving American Medicine,” and who talked about how to become involved and proactive patients. Most importantly, we heard from others who share this journey; it was an amazing few days.

I’d like you to think about making the same kind of difference by getting involved.  Northeast Kidney has an Advocates’ Alliance, and we work on both the state and federal levels, primarily on issues related to kidney, dialysis, transplant and organ donation.  You know the wait for kidney transplants is too long; we are working on increasing organ donation rates.  You know sometimes it’s hard to get access to the medications we need, due to expense or coverage issues; we work on improving that. Please consider joining us –  you don't need to be a policy expert or be able to quote regulation chapter and verse, believe me.  We just need your passionate voice of experience; it really does resonate with those making the decisions, and you can genuinely make an amazing difference in the lives of all patients.  Please think about it - then be in touch.