KIDNEY FOR MEL

This is my friend, Melissa Tuff, who is seeking a kidney donor. She is also an advocate for the NKF who fights for all us kidney patients. Please like and share her post. If you can please get tested for Mel.

Mel’s Kidney Page on FB: https://www.facebook.com/groups/MelNeedsAKidney/

To show you what a great advocate she really is, here is a letter that she wrote to Alan Grayson:

“Letter from Melissa Tuff to Alan Grayson

James Myers

Crown Point, IN

Oct 16, 2016 — Alan Grayson I would like to implore you to read over and sign on to show your support for H.R. 6139 the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2016. As an 11 year kidney recipient who is now among the 120,000+ waiting on another organ I have struggled many times over the years with lapses in prescription coverage which have caused damage to my transplant when I have had to make my immunosuppressive meds stretch by taking reduced doses just to try and prevent fully rejecting my kidney during the times in which I was denied coverage by my employers because I would “make their premiums too high” or when Medicare and Medicaid were not options because my 36 months of coverage post-transplant had been exhausted. I lost my house, my car, and essentially have went bankrupt to maintain my gift of life for the past 11 years and in all honesty if it meant losing everything to keep my kidney versus going back on dialysis, I would live in a cardboard box under a bridge any day of the week! This gift has been such an incredible blessing but the stress of continued accessibility to my lifeline or medications can be quite daunting which is why so many patients have been reluctant to even get a transplant. So please, for one moment step outside of your experience and put yourself in our (transplant recipients) shoes. Consider the agony of fighting so hard to get your life back only to constantly worry if you can afford to keep it. In conclusion I would just like to say thank you for taking the time out of your busy schedule to read this, and I sincerely hope that you will find it in your heart to support this act and encourage your colleagues to do the same. God bless.

Melissa Tuff, Cape Coral
Florida State Representative for the National Kidney Foundation.“

Mel Needs A Kidney

This is my friend, Melissa Tuff, who is seeking a kidney donor. She is also an advocate for the NKF who fights for all us kidney patients. Please like and share her post. If you can please get tested for Mel.

Mel’s Kidney Page on FB: https://www.facebook.com/groups/MelNeedsAKidney/

To show you what kind of advocate she really is, here is a letter that she wrote to Alan Grayson:

Letter from Melissa Tuff to Alan Grayson

James Myers

Crown Point, IN
Oct 16, 2016 — “Alan Grayson I would like to implore you to read over and sign on to show your support for H.R. 6139 the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2016. As an 11 year kidney recipient who is now among the 120,000+ waiting on another organ I have struggled many times over the years with lapses in prescription coverage which have caused damage to my transplant when I have had to make my immunosuppressive meds stretch by taking reduced doses just to try and prevent fully rejecting my kidney during the times in which I was denied coverage by my employers because I would “make their premiums too high” or when Medicare and Medicaid were not options because my 36 months of coverage post-transplant had been exhausted. I lost my house, my car, and essentially have went bankrupt to maintain my gift of life for the past 11 years and in all honesty if it meant losing everything to keep my kidney versus going back on dialysis, I would live in a cardboard box under a bridge any day of the week! This gift has been such an incredible blessing but the stress of continued accessibility to my lifeline or medications can be quite daunting which is why so many patients have been reluctant to even get a transplant. So please, for one moment step outside of your experience and put yourself in our (transplant recipients) shoes. Consider the agony of fighting so hard to get your life back only to constantly worry if you can afford to keep it. In conclusion I would just like to say thank you for taking the time out of your busy schedule to read this, and I sincerely hope that you will find it in your heart to support this act and encourage your colleagues to do the same. God bless.

Melissa Tuff, Cape Coral
Florida State Representative for the National Kidney Foundation”

A Historic Election

Great post and update!

Advocacy in Action

The presidential election was historic in many regards, including the first woman as a major party nominee and a nominee with no previous public office or military experience.  The Republican party will now have control of the White House, both Houses of Congress, and the possibility of a conservative Supreme Court. Click here to see the NY Times’ election maps.

The question before those of us focused on kidney disease is what will President-Elect Trump and the Republican party do with their new political power?  What will the first priorities be?  What does this election mean for healthcare including insurance plans in the Affordable Care Act (also referred to as “Obamacare”), business’ group health plans, Medicaid expansion, drug pricing reform efforts, and value-based care and delivery system reforms that were implemented under President Obama as a method of improving patient outcomes?

We can expect the President-Elect and Republican Congress…

View original post 520 more words

Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies

leilah-sampson-and-kevin-longino-9-28-16

Posted on October 27, 2016 by nkf _advocacy

By Kevin Longino, CEO and Leilah Sampson, Kidney Advocacy Committee Patient Liaison

As kidney transplant recipients and advocates we were enthusiastic and hopeful to learn that the Food and Drug Administration (FDA) had scheduled a public meeting for organ transplant recipients to share their experiences with scientists and decisions makers in new drug development as part of the Patient Focused Drug Development Initiative.  For the past few years the National Kidney Foundation (NKF) has advocated for FDA to include organ recipients as part of this initiative, so we were pleased that our advocacy efforts were successful.  However, we also know following the meeting much more advocacy will be needed to advance solutions to the issues that organ recipients raised during the meeting and the National Kidney Foundation is committed to this effort.  First and foremost, if you are reading this and have not submitted your own comments on the questions raised during the meeting you can do so here.  Additionally, since we were selected as panelists we wanted to share our thoughts and experiences at the meeting.

Prior to the event, we were asked to respond to ten questions divided into two topics on life post organ transplant. The first topic was titled, “Disease Symptoms and Daily Impacts That Matter Most to Patients”.  This topic focused mainly on how your symptoms (post transplant) affected you emotionally and physically in completing daily tasks. The second topic titled, “Patients’ Perspectives on Transplant and Treatment Options” focused more on how you are managing your post transplant treatment regimen. As we mentioned, you can submit your own responses to these questions as well and we encourage you to do so.

Leilah participated in the panel on topic one, as one of five panelists and the only adult kidney transplant recipient alongside of the Pediatric kidney representative and lung, liver, and heart recipients.  In preparation for the meeting, Leilah met with FDA staff in charge of the meeting who expressed appreciation for her honesty about her post transplant experience not being “rainbows and sunshine”, but more so trial and error. They also felt because she was a transplant newbie; she could represent a fresh perspective that would help balance the other seasoned panelists perspectives. FDA briefed Leilah on what to expect when she arrived and to prepare a narrative style version of her comments (as patients get nervous on the panel). Leilah set the intention for her speech to reflect her life of self compassion and honoring her transplant process.

When we arrived at the campus we were appreciative to see so many patients, caregivers, researchers and FDA staff all committed to hearing the voices of organ transplant recipients. The first half of the day was all patient discussion on comorbidities, daily challenges, medications and side-effects post-transplant. Many recipients, like Leilah, shared their experiences having depression and anxiety post transplant. Many also highlighted social stigma as the public expecting them to be “cured” from disease with their new organ, when in reality the need to take multiple medications at specific times of the day, and that had various side-effects reminded them they were still not “normal”. Some participants indicated hesitancy to discuss symptoms post transplant with their healthcare professionals as they had received comments back that they should learn to adapt and instead focus on the fact they were still alive and no longer on dialysis.

Polling questions were asked of the audience and multiple choice responses given as options, but throughout the polling there were a significant number of patients who experienced challenges not captured by the multiple choice responses and instead indicated “other” experiences during the polling.  Some of the comments raised in those “other” categories included: fear of rejection, but also fear of infection, skin cancer, and other cancers due to immunosuppression therapies – many participants had also experienced these complications.

The addition of the afternoon sessions was different than past PFDD meetings for other conditions. The afternoon included scientific presentations and panels on non-adherence to transplant regimens and interventions to improve adherence.  Most of the patients participating in person indicated that while they faced challenges with taking multiple medications, overall they were adherent. Although they also recognized they were perhaps not reflective of all organ transplant recipients.  Webinar participants indicated through polling a greater difficulty with adherence than those participating in person. We and other participants discussed how we were active in working with our care team to modify dosing of medications to reduce side effects.  Kevin specifically indicated a need to have personalized immunosuppressive regimens, which could improve both adherence and reduce side effects.  We and other participants also acknowledged a need for greater psychosocial support from our care team post-transplant.  Of course, we were all supportive of one organ recipient’s comment on the need to have one magic combination pill that we only have to take once a day – oh and it could come with no side effects too.

We were surprised to see so little interaction from the FDA staff. They fulfilled their duty of hearing the voices of the patients. After a long day of discussions, presentations, and polling about symptoms and the impact of organ transplant regimens on patients; we left better educated but even more motivated. More importantly, we left with the obligation to spread what we learned from the research and opinions of other seasoned organ transplant patients to the pre-transplant community. I think we all agreed that laying the foundation for post-transplant life begins with implementing support and coping skills long before transplantation occurs. Although we have only scratched the surface of trying to understand how to better support organ transplant patients; we are pleased to know that the FDA, among many other organizations, are opening their ears to hear from us – the patients.  If you are an organ recipient please do take the time to send your responses to the FDA by November 27, 2017, they are listening and comments will be included in the final report.  You can also view the presentations and listen to the recorded meeting here.

 

 

 

https://nkfadvocacy.wordpress.com/2016/10/27/organ-recipients-share-their-experiences-with-fda-to-promote-innovation-in-immunosuppressive-therapies/

Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies

By Kevin Longino, CEO and Leilah Sampson, Kidney Advocacy Committee Patient Liaison As kidney transplant recipients and advocates we were enthusiastic and hopeful to learn that the Food and Drug Ad…

Source: Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies