KIDNEY FOR GLORIA

https://www.facebook.com/Find-A-Kidney-For-Gloria-564016173756409/

Will you help me? My blood type is B+ and I am listed at Albany Medical Center Transplant Center.

Dear Donor:

 I cared for so many people over the years as a nurse and now it is time for me to tend to my illness which is chronic kidney disease (CKD). All the encouraging words I uttered to others as they tried to get well, I am whispering to myself like, “you will be fine in time;” “don’t worry, everything is going to be okay” and “stay strong.” As much as words can improve the condition of the mind to create an environment where healing can flourish, it is equally important to get the treatments right. My treatments are dialysis. They are given several times per week for several hours each time. They are wearing me down and I am honestly concerned that if I have to do this much longer it will wear me out. The problem is that when you experience kidney failure nothing can be done to rejuvenate its function, therefore all you have to hope for is that you will be granted a transplant. I’ve been hoping and praying that I will get the call saying a donor has been found, but it has been years and no call has come to me. Part of the problem is that I am just a number on a list, a mere name who lingers there month after month. Nobody there knows that I have two of the most wonderful sons in the world who need me still or that I am a 54 year old former nurse. If I could practice nursing right now, I would. In a heartbeat I would go back to the way life was for me before CKD came crashing into my world. They don’t know that I suffered with hypertension, preeclampsia and glomera nephritis when I was pregnant and that is how my kidneys were damaged. To them I am one cell in a very large grid. That is why I have decided to take my chances and come to you directly through this page. I want to ask you personally to be my donor. Please take a moment of your time to leave me a message. I would LOVE to talk to you. I would LOVE to learn about you. I would LOVE to know that somebody out there sees me and knows that I have so much left to give.

 There are happier days ahead in this battle because people are now waking up to the fact that the medical and scientific evidence is resoundingly clear when it states that human beings can live their full lifespans with only one healthy kidney. That bit of information has been a big motivator of thousands of people who have become living donors. These people stepped up and saved the lives of people they loved and in some cases of people they had never met rather than see them die. I am searching for my living donor. I am dying to meet him/her – LITERALLY, dying to meet him/her. I need that special donor to help me restore my health and receive true healing from CKD. Will you help me?

 My blood type is B+ and I am listed at Albany Medical Center Transplant Center.

 Very Kindly Yours,

 Gloria

PRESTON'S PRAYER POSSE

It’s a gift few can give.
“It’s out there,” Amanda Weber says. “We just gotta find it.”
Weber is searching for a new kidney for her son, Preston Tinter.
At 12 years old, Preston looks half his age. He stands just four feet tall.
Other children his age “have 12 inches on him,” Weber says.
Preston’s development was stunted before he was even born. He stopped growing in the womb; forcing doctors to induce labor six weeks early.
His kidneys failed right away.
After 14 months of dialysis, Weber was able to donate one of her kidneys.
“We went really great for about five to six years and then things started to take a turn for the worse,” Weber said.
Urinary tract infections destroyed Preston’s bladder, which had also never fully developed.
Preston’s body can no longer support the donated kidney. “It loses steam every year,” Weber said.
Learn more about Preston here.
Doctors performed bladder reconstruction surgery this fall. It means Preston will never be able to use the bathroom. A catheter drains his surgically created stoma every three hours.
“It’s forever,” Weber said. She tears up talking about the basic functions her son has lost.
But the bladder reconstruction will hopefully prepare Preston for another kidney donation.
I helped him once,“ Weber said. "I can’t again.”
There are more than 100,000 people nationwide on the waiting list for kidney donations, according to the Organ Procurement and Transplantation Network. In Minnesota, 2,276 people are waiting for a kidney donor.
Pediatric organ failure is rare. Children between the ages 11-16 make up less than one-percent of the waiting list.
Preston, who was not expected to live past his first birthday, has a slimmer chance than most of finding a donor. He’ll only match about three percent of the country.
“That’s devastating,” Weber said.
Their best hope is finding a living donor, which can shorten the waiting time. The University of Minnesota Medical Center boasts of being the world leader in  living donor transplantation  , having performed 4,000 such transplants.
But the number of living donations in the state is trending down. In 2015, 193 people donated an organ in Minnesota, the lowest amount in twenty years, according to data compiled by the U.S. Department of Health and Human Services.
Weber blames a lack of awareness. “I think people are almost afraid.”
She won’t stop searching for the gift only a few can give.
“If I could I would, but now my job as a mother is to find that kidney for him no matter what it takes.”
https://www.facebook.com/Prestonsprayerposse/

I just started a new page for my friend Chris. Please visit the page, hit the like button, leave Chris a word of encouragement, and share, share, share the page! Let's make this a great page on FB! https://www.facebook.com/Kidney-for-Chris-529698090527031/…

LETTER I REC'D TODAY FROM SEN. DAN COATS ON MEDICARE PART B PREMIUM SPIKE

LETTER I RECIEVED TODAY FROM SEN. DAN COATS ON MEDICARE PART B PREMIUM SPIKE

Posted on October 26, 2015 by kidneystories

LETTER I RECIEVED TODAY ON MEDICARE PART B PREMIUM SPIKE FROM SEN. DAN COATS

Dear James:

Thank you for contacting me regarding premium increases in 2016 for Medicare Part B and the Cost of Living Adjustment (COLA) for Social Security beneficiaries.  I appreciate the opportunity to respond.

Medicare is the federal health insurance program for most individuals who are sixty-five and older and for certain disabled persons. Medicare Part B provides coverage for physicians’ services, outpatient services, durable medical equipment, and other services.  Part B is financed through a combination of beneficiary premiums and federal revenue.

Many Medicare Part B beneficiaries also receive Social Security benefits.  Contrary to popular belief, Congress does not determine annual Social Security COLAs.  Social Security COLAs are determined by an economic formula that measures the increase or decrease in the price of goods in the American economy.  This formula, the Consumer Price Index for Urban Wage Earners and Clerical Workers (CPI-W), is the sole determining factor of a COLA for Social Security recipients.  In 2015, Social Security beneficiaries received a 1.7 percent COLA.  However, in 2016 there will be no COLA because the CPI-W decreased.

By law, Medicare Part B premiums, which are deducted automatically from Social Security checks for those who receive Social Security, must cover 25 percent of the projected annual Part B costs.  The Social Security Act (SSA) includes a “hold harmless” provision that prevents premium increases should the amount be higher than their Social Security monthly benefit.  While this hold harmless provision will prevent Part B increases for about 70 percent of beneficiaries, 30 percent of beneficiaries who are not covered by it must pay the portion that otherwise would have been spread across all beneficiaries.

Each year, the Centers for Medicare and Medicaid Services (CMS) determines the Medicare Part B premiums for the following year.  Reports that some beneficiaries will face a steep 2016 premium increase are based on a July 2015 Medicare Trustees report.  The Trustees documented an unexpected increase in Part B spending that they estimate would cause premiums to rise.  Since there will be no Social Security COLA increase in 2016, the Trustees estimated that the projected standard Medicare Part B premium is expected to increase from $104.90 to $159.30 in 2016 for those not protected under the hold harmless provision.  Individuals not protected and thus subject to the increase are: those covered under both Medicare and Medicaid (“dual eligibles”); high income earners already subject to higher premiums; new beneficiaries; and those not collecting Social Security benefits.  The law does provide CMS with some discretion in setting premiums, though CMS has not officially announced the 2016 premium amount at this time.

I understand that steep increases in Part B premiums will place a significant burden on those Hoosiers who are not protected by the hold harmless provision.  As a member of the Senate Finance Committee, I am closely monitoring the actions of CMS and I am actively engaged in examining responsible options to fix this imminent problem and to address long-term solutions to preserve benefits for current and future beneficiaries.

Thank you again for contacting me, and please do not hesitate to keep in touch on other matters of concern to you.

Sincerely,

Dan Coats
United States Senator

To learn more about the work I’m doing on behalf of Hoosiers, sign up for my newsletter, visit my website, and follow me on Twitter and Facebook.

My reply:

Senator Coats:

Thank you for your reply of 10/26/2015.  I appreciate your thoughtfulness.  I am curious what your position is on co-sponsoring, supporting and voting for the fix for this problem, S. 2148?  Thank you again for such a prompt reply to my initial inquiry.  I hope to see you in Washington, DC in March as part of the celebration for World Kidney Day. 

Your friend and fellow Hoosier,

James W. Myers, III

Kidney Advocate

LINK TO PETITION TO FIX THIS PROBLEM

https://www.change.org/p/u-s-congress-congress-act-now-to-prevent-a-drastic-spike-in-medicare-part-b-costs-to-esrd-patients

PETITION PROTESTING SUBSTNTIAL INCREASE IN MEDICARE PART B PREMIUMS AND LETTER FROM SENATOR JOE DONNELLY

https://www.change.org/p/u-s-congress-congress-act-now-to-prevent-a-drastic-spike-in-medicare-part-b-costs-to-esrd-patients

LETTER I REC'D FROM SENATOR JOE DONNELLY TODAY

October 20, 2015

Dear Mr. Myers,

Thank you for taking the time to contact me with your concerns about potential Medicare Part B premium increases for certain beneficiaries. Like you, I believe seniors on a fixed income should not be faced with unreasonable premium increases. Most seniors enrolled in Medicare Part B are expected to pay a monthly premium, which covers about 25 percent of the cost of the services provided under that section. Monthly Part B premiums—which help pay for physician services, outpatient care, and durable medical equipment—are automatically deducted from beneficiaries' monthly Social Security payments. In years that monthly Social Security benefits are not increased, some seniors may face an increase in Part B premiums to make up for the growing cost of health care services. Most beneficiaries are protected by a "hold harmless" rule, which prevents increases in Part B premiums that exceed the dollar amount of the increase in their Social Security checks. The hold harmless rule protects approximately 70 percent of Part B participants, meaning their Social Security payments are not impacted. However, the remaining 30 percent of beneficiaries could shoulder the entire beneficiary share of the increase in Part B costs. This means some Part B beneficiaries could see their monthly premium increase by $50 or more. In addition, the Part B deductible for all beneficiaries will increase from $147 to $223. The beneficiaries who are not protected by the hold harmless rule include:

•Low-income beneficiaries whose Part B premiums are paid by the Medicaid program;

•High-income beneficiaries who are subject to income-related Part B premiums;

•Those whose Medicare premiums are not deducted from Social Security benefits; and

•New enrollees in 2016

To address this issue, S. 2148, the Protecting Medicare Beneficiaries Act, was introduced on October 7, 2015. If enacted into law, this legislation would prevent premium increases for 15 million beneficiaries and reduce the Part B deductible for all Medicare beneficiaries. The Protecting Medicare Beneficiaries Act is pending before the Senate Committee on Finance. Should this legislation come before the Senate for a vote, I will be sure to keep your thoughts in mind. It is a privilege to represent you and all Hoosiers in the Senate. Your continued correspondence is welcome and helps me to better represent our state. I encourage you to write, call, or email if my office can ever be of assistance. You can also check out my Facebook page and follow me on Twitter by visiting my

website.

Sincerely,

Joe Donnelly

U.S. Senator 

NEW VIDEO I MADE FOR THE AAKP

This is a video I made for the American Association of Kidney Patients. I was very fortunate to have been named as the very first winner of the Social Media Patient Activism Award. Many thanks to the AAKP and Paul Conway!


https://www.facebook.com/jamesmyers3/videos/10153518679500041/

VICTORY FOR KIDNEY PATIENTS WITH 21ST CENTURY CURES BILL

Victory with Passage of 21st Century Cures Bill

Posted on July 10, 2015 by nkf _advocacy

We’re pleased to announce that the 21^stCentury Cures Bill has passed in the House of Representatives with a 344-77 vote. The bill guarantees increased NIH funding over five years and will ensure greater investment in research, including research on kidney disease.
Here are some of the key provisions that were included in the 21^st Century Cures Bill: 
An $8.75 billion increase in research funding over five years at the National Institutes of Health (NIH)

• This new money will give NIH the resources it needs to engage in research that can lead to new cures and treatments for the millions of Americans living with chronic conditions.

Patient Focused Drug Development

• Allows a pathway for patient’s experiences to be collected and used by the FDA when determining the risks and benefits of a product prior to its approval. Patients know best how their disease affects them and how much risk and what type of risk they would be willing to trade for added benefit. This provision will help ensure the FDA takes patients into account when making drug and device approval and labeling decisions.

Surrogate Endpoint Qualification and Utilization

• One of the biggest barriers to the approval of new kidney disease drugs is the length of time it takes to reach the current FDA endpoint. An  endpoint refers an outcome that can be measured as a target in clinical trials, when a direct relationship can’t be measured through a real endpoint, a surrogate endpoints may be used in some cases to establish a relationship between the drug and patient outcomes. For kidney disease, the surrogate endpoint has typically been the doubling of serum creatinine to replace the outcome of kidney failure (57% decline in kidney function based on glomerular filtration rate).  The trial design required to reach that surrogate endpoint can take well over five years and are excessively expensive to conduct, making studies in CKD drugs less attractive to manufacturers.  In December 2012, NKF and the FDA co-hosted a workshop to discuss potential surrogate endpoints for clinical trials. They concluded that in some kidney disease populations, a 30 or 40% decline in kidney function was adequate to show a high risk of mortality and progression to ESRD. Following that meeting, another study showed that the lesser decline in kidney function, such as 30% over two years, is a strong predictor of progression to ESRD or higher mortality. A consistent and transparent process for how FDA considers and approves the use of new surrogate endpoints may help spur more clinical trials in kidney disease.

Continuing Medical Education Sunshine Exemption

• Continuing medical education (CME) is an important component of spurring new ideas for research and innovation. This provision will make it easier for organizations like NKF to provide CME opportunities to practitioners and for practitioners to easily access peer-reviewed journals and medical literature they need to stay on top of new research and studies.

The passage of this bill would not have happened without for the dedication of NKF’s thousands of supporters and our Kidney Action Committee members. To all of you who wrote letters and called your representatives, thank you for ensuring that kidney patients have a voice in this new legislation.