Dialysis and Our Voice In Congress

As you sit in a treatment chair or go through your routines in a dialysis center or at home, it may seem like ESRD and transplant patients don’t have much of a voice in the huge medical juggernaut surrounding us.  But, there is a voice and that voice was heard very loudly in the halls of Congress last fall.  I know because I was one of those voices.

In September 2011, I was privileged to participate in a semi-annual “fly-in” hosted by the Dialysis Patient Citizens  inWashington,D.C.  There were about twenty of us from all over the US who assembled on a Tuesday evening and immediately went to work.  First, there was orientation where we were briefed on our purpose for this event.  We were there to talk to our Congress members about two important matters.  First, was House Bill number 2969, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011”  and, second, to make sure that ESRD patients would continue to have access to private health insurance in the new Health Insurance Exchanges that are part of the Medicare changes in the Affordable Care Act (ACA, also known as “Obamacare”)

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011 (HB 2969) is, very simply, a bill introduced by Representative Dr. Michael Burgess (R-TX – Fort Worth area) that will extend the Medicare drug benefits to transplant patients so they can continue their Medicare Part D coverage for the lifetime of their transplant.  With out this, transplant patients lose their drug benefits under Medicare after 36 months following the transplant.  The result is that often patients can’t bear the burden of the costs of anti-rejection drugs, stop taking them, end up rejecting the kidney and return to dialysis.  Our point to the Congress members was that keeping patients on their anti-rejection drugs was far less expensive than returning to dialysis.  In this time of concerns for costs and deficits, saving money was an important feature that got their attention.  For drugs that cost about twenty thousand dollars per year versus dialysis that costs about eighty thousand dollars per year.

Making sure that CKD and ESRD patients have the same access to private insurance, both inside and outside the exchanges created by ACA, was the second issue we were to present.  The need to maintain consistent application of the Medicare Secondary Payer (MSP) law, which permits ESRD patients to keep their private health insurance coverage for 30 months before Medicare becomes the primary payer benefits everyone involved. Ensuring this protection will mean equal treatment for kidney disease patients and has the potential to save the Medicare program billions over the next ten years.

Very early the next morning, those of us who are in-center dialysis patients, were bused to a local center to get our treatment.  The regular first-shift patients and staff graciously came in at 2 a.m. to allow us to use their time slots.  After that, we assembled back at the hotel for the first major event of the trip, a conference with Congressional staff members and members of the Congressional Kidney Caucus. A panel of patients spoke of their personal experience with kidney failure and transplants and answered questions from the floor.

That evening we convened for training in the skills we would need for the next day in our meetings with members of Congress or their staff.  We were instructed in how to make our points about H.B. 2969 and the Insurance Exchanges.  A professional trainer well versed in these matters gave us many pointers and suggestions along with an explanation of how the Senators and Representatives offices operated.  By the end of the session, we knew our objectives and were ready to go.  We were formed into groups of two states.  In my case, I was paired with DPC members from the state of Oklahoma and fellow residents of Texas.  We were given our schedules and told to rest up for the long day ahead.

The next morning, immediately after breakfast, we embarked on our pre-arranged meetings with the Congressional members.  In some cases, the Senator or Representative personally met with us and listened attentively.  We carefully and quickly made our points as we were instructed.  To get even ten minutes in a personal meeting was a special occasion.  We were very pleased when Senator Inhofe of Oklahoma spent about twenty minutes with us. (I only had a photo session with Senator Hutchison and Senator Cornyn was not available.) In all we met with the staff of both Senators of Texas and Oklahoma and several of the Representatives from those states. As we were told, in most cases, we met with the Legislative Aide who was responsible for healthcare issues. We were impressed with their knowledge of these specific issues we were there to discuss.  Most were pleased to hear what we had to say and were supportive of our needs.

It was an exhausting day for everyone concerned.  That evening we convened back at the hotel where I picked up my belongings and made for the airport and returned home.  On the trip home I reflected on the fact that I played a small role in advancing the interests of the thirty-six thousand dialysis patients in Texas thanks to organizations like Dialysis Patient Citizens.  And, now, I’m doing more as a Patient Advisory Committee (PAC) member of the ESRD Network.  It’s a small contribution but it shows that as we sit in our treatment chairs quietly waiting for our life-giving treatments, we have a voice.

© 2012 DevonTexas

1 – http://www.asn-online.org
2 – http://thomas.loc.gov/cgi-bin/bdquery/z?d112:H.R.2969:
3 – http://www.a-s-t.org
4 – http://virtualmentor.ama-assn.org/2012/03/pfor3-1203.html 

About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I could be hooked up to a machine that would clean my blood as the kidneys should. Three days a week, I went to a dialysis center and had too very large needles stuck in my arm to remove and replace my blood as it passed through a process where it was cleaned and the fluid was removed, a process taking a little over four hours each time. In November 2017, I received a kidney transplant from a deceased donor. My life went into overdrive. With a "new" functioning kidney, I no longer had to go to a dialysis center and my days were not open to be lived rather than recovering from dialysis which meant dialyzing for three days and resting for 4 days a week. I work full-time and often 50 hours per week. It is something I never imagined. I highly recommend it! HeeHee I want to advance knowledge about dialysis and transplant so that others can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them in www.DevonTexas.com All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. I also blog in LegacyTales in WordPress if you are interested in the ramblings of a Old Man. Give a peek and let me know what you think. https://legacytales.wordpress.com/ Enjoy.
This entry was posted in ACA, Affordable Care Act, dialysis, ESRD, friendship, lobbying, Medicare, Obamacare, patient care, politics and tagged , , , , , , , , , . Bookmark the permalink.

5 Responses to Dialysis and Our Voice In Congress

  1. MAY LEE says:

    Thank you for having the energy to represent kidney patents. I am on PD and have mid day dialysis drain and fill which means I can’t be on a plane longer than 3 hrs.It makes a trip to DC impossible from Ca.

  2. nachomama311 says:

    Thank you Devon for all that you’re doing! I am a PD patient in TX on a waiting list for a transplant, and have been seriously nervous about the changes in store for us and Medicare. I’m so thankful that you took the time to represent us and our state on such an important issue! I’ve been reading your blog and find it’s very informative and offers a very personal perspective of what its like to have kidney failure and the frustrations involved with it! Thanks for sharing! I’ll be following…

  3. Evaseibs Mceve says:

    Very helpfull information I want to start a support group please do help.advise

    • DevonTexas says:

      There are a few things you can do to start a support group. First, get a location. It could be the dialysis center or an outside location like a church or community center. Then, find some topics. Get a few topics lined up. It could be “fluid control” or “Kidney Diet” for example. You could simply make it a discussion group where you introduce a topic and the group talks about it or you could get various speakers to talk on that topic or one they choose. Finally, you need to get the word out. Post flyers in the center, talk to patients, and involve the staff as support especially the social worker. You may only have one or two patients the first few times but word gets around and “if you build it, they will come”. Meet consistently and regularly. The potential participants need to find you. Good luck and thank you for the question.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s