KIDNEY STORIES ON BLOGGER

Monday, March 19, 2018

PKD ON THE MOUNTAIN

Friday, March 16, 2018

Medicaid work requirements could be disastrous for chronic disease patients and caregivers

Medicaid makes it possible for many low-income people to afford health care they otherwise couldn’t pay for, often because they’re struggling to maintain full-time work, whether from being pregnant, elderly, sick or disabled. Many chronic disease patients who are unable to work or only work part-time because of their condition fall below their state’s designated income level, making them eligible to receive health care coverage through Medicaid.

Unfortunately, the Centers for Medicare and Medicaid Services (CMS), part of the federal department of Health and Human Services, issued a guidance document in January announcing that states would be allowed to institute work requirements for non-elderly, non-pregnant Medicaid beneficiaries. Several states, including Indiana and Kentucky, have already began requesting waivers allowing them to issue these requirements.

This poses grave consequences for patients and caregivers who rely on Medicaid and for the states implementing these changes. Here are three reasons why work requirements are unnecessary and bad for Americans.

1. Most Medicaid recipients are already working if they are able to.

The Kaiser Family Foundation reported that six in 10 adults receiving Medicaid are already working either full or part-time. Those who aren’t working are unable to for reasons such as illness, disability or their role as a caregiver.

One mother in Texas who relies on Medicaid recently explained the challenges of raising her two autistic boys, who require significant help and have unpredictable outbursts that make it difficult to keep a job.

“Even jobs I’ve taken under an explicit understanding of my situation have been tough to keep,” Trish Florence explained in an article on Vox. “It would only take a few weeks of teacher phone calls and leaving work to handle a meltdown before the disapproving looks and casual critical comments started. As much as a manager may understand my unique needs, many businesses find it hard to function without reliable employees. My situation renders me unreliable, through no fault of my own, and so I become essentially unemployable.”

For people like Florence, imposing work requirements would likely cause them to lose access to their health care coverage, making it impossible to meet their families’ essential needs.

2. Work requirements don’t comply with Medicaid’s rules.

According to Families USA, requiring Medicaid beneficiaries to work is illegal.

For one, the secretary of Health and Human Services may be able to waive certain Medicaid requirements, but they are not able to create all new criteria, such as a requirement for recipients to work.

In addition, Families USA noted that the work requirements could implicate civil rights protections under the Americans with Disabilities Act. There are other problems as well.

“Work requirements would increase the ranks of the uninsured and hurt Medicaid enrollees’ ability to work, rather than promote work,” Families USA wrote.

3. Work requirements won’t move Medicaid recipients out of poverty.

One of the main drivers behind the federal government’s guidance is the intention that work requirements will move patients out of poverty.

Yet, an examination of the effectiveness of work requirements in the Temporary Assistance for Needy Families program (TANF) found “the large majority of individuals subject to work requirements remained poor, and some became poorer.”

The TANF study also found that many people who were able to find work were often unable to hold stable employment. For chronic disease patients, this would also be a concern, as the toll of treatment and many daily activities make it difficult to be a successful employee.

While it seems obvious to patients that this policy would have disastrous consequences for Medicaid recipients, our nation’s policy makers need to hear from you. Join the Chronic Disease Coalition as we continue to fight for patients’ access to coverage that works best for them.

FacebookTwitterGoogle+Share

Tags: Medicaid, Patient rights

LEARN MORE

ABOUT CDC

WHAT WE DO

STAFF

CONTACT

COMMUNITY

NEWS UPDATES

TAKE ACTION

SHARE YOUR STORY

ACTION ALERT

Full Name*

Full Name

Email*

Phone

Type your message here

Optional: type your message

Interests - Select all that apply

Alzheimer's disease

Arthritis

Cancer

COPD

Crohn's disease

Diabetes

Epilepsy

Fibromyalgia

Hemophilia

Heart disease or stroke

HIV

Kidney disease

Lupus

Multiple sclerosis

Psoriasis

Other

SEND MESSAGE

Read Patient Stories from The Mighty

Sunday, February 25, 2018

Kidney 4 Doc

This is my new friend, Candie (Doc) Gagne. Her full name is Gitthaline Candie Mulligan Gagne. She is a Certified Surgical Technologist at UPMC Mikeesport Hospital and Retired Navy Hospital Corpsman, Certified Surgical Technologist.

In December of 2016, Candie broke her ankle and had to have surgery. By February 12, 2017, she was found unreponsive, with a high creatine level. She had emergency dialysis for the next several weeks and inconclusive kidney biopsy. Her kidneys did not respond to conservative treatment and she was declared ESRD.

She had a catheter placed and on April 4th, started dialysis. By July 3rd, she was placed on the transplant list. She is also a caretaker for her husband, who suffers from service related partial paralysis of the left leg, A-Fib, CHF, and stage 4 Kidney Failure.

She is listed at the University of Pittsburgh Medical Center (UPMC). She is an O blood type, but the UPMC recognizes Paired Donation, so any blood type can donate on her behalf.

To test to donate for Candie you can contact:
1. Her Living Donor Coordinator, Angela Barber at barberas@upm.com or 412-647-5489.

2. Her Administrative Coordinator, is Laurie L. Tub, Administrative Coordinator, UPMC Transplant Services, tubbll@upmc.edu,
412-647-3476 Phone, 412-692-4154 Fax.

3. Nanci McCombs
UPMC Waitlist Transplant Coordinator
‭(412) 432-3050‬
‭(412) 647-5070‬ fax

Please like and share Candi's page, and if you can, share your spare with this Veteran and Life- Saver!

https://m.facebook.com/Kidney4Doc-991655550972880/

Link for donor form at UPMC: https://livingdonorreg.upmc.com/

Book Review: MORE THAN A CONQUEROR LEGACY

MORE THAN A CONQUEROR LEGACY

A BOOK BY BILL HAHN

REVIEWED BY JAMES MYERS

Available at Amazon.com: https://www.amazon.com/dp/1546992391

ISBN-13: 978-1546992394

ISBN-10: 1546992391

I recently had the great pleasure of reading a book by my good friend and colleague, Bill Hahn. Spiritual, emotional, personal, revealing, this is a good read, even if you are not interested in kidney/organ donation. This book is about one man’s journey from life-altering loss, to near death, to rebirth and making the journey a blessing to others. In his Forward to the book, Congressman Posey’s message says it best: Despite all odds that Hahn encounters, Bill is a tireless advocate for organ donation, and just from his tone, you realize that the Surfpro is a guy that get things done; a bottom line overachiever.

During that time period, Bill that he has overcome much in his journey; total blindness, comas, seizures, heart attacks and cancer.

It is in the Christian way that he responds to the drastic changes in his life that makes this book special. Imagine one day your ripping up waves in Florida, and 26 years later you’re in the hospital getting a fistula installed and placed on dialysis due to diabetes followed quickly by End Stage Renal Disease.

Time passes, once, twice he is called for a new kidney, only to be turned away. But the third time, Bill gets THE CALL!

In Bill's own words,

"My first CALL I said NO. The reality that some had passed hit me as I needed both a kidney and pancreas transplant. By the second CALL I realized God has a plan for each of us so I said YES but the organs had been compromised and my gift of life was put on hold. Call number three was the miracale. GODS PLAN."

His New Year’s Miracle came at the age of 52, and he became a Kidney/Pancreas Warrior, advocating in God’s name and his donors name. He is reborn, transplanted, given back to us. 9 years and counting, Bill has been given new life. He calls this his New Year’s Eve Miracle, a gift from God. Prayers answered, Bill has become a world class Kidney/Organ Donation Advocate. He has done much to honor his New Gift of Life, Including:

• The Annual Footprints in the Sand Kidney Walk for the National Kidney Foundation of Florida;

• The Starfish Donor Mom Tribute Dinner;

• Helping Dialysis Patients Understand They are not Alone;

• Inspiration for Those That Have Just Received a Donated Organ;

• Establishing May 13th as Florida Living Donor Day;

• Building Sand Castles of Hope with pediatric kids and families;

• Writing the Song, Surfer’s Story, Now in the Library of Congress;

• Bill’s Mother and Father are responsible for the Dedication of the Hahn House Museum in Wisconsin, Bill continues to protect that legacy;

• Bill’s Mom and Dad are responsible for the Dedication of the Great Sauk State Trial and having it placed on the National Registry of Historic places, Bill continues to protect that legacy

• Bill is responsible for the creation of Life River Walk to be completed in 2018, that is adjacent to the Hahn House.

Bill has dedicated his life to others. This book, much like the man, is an amazing testament to his determination, hard work and faith. It is sensitive and inciteful. Just check out all the You Tube videos that go with each and every chapter of this book. Prayers, music, interviews, poems, and live events, showing the heart and soul of this Christian Kidney/Organ Donation Advocate. The strength, selflessness and sensitivity to the needs of others are the essence of Bill Hahn.

Bill teaches us,

"Godspeed to all those waiting. Gods grace to all who receive the Call."

This book is a vivid reflection of this great man.

Tuesday, February 20, 2018

Patient rights, third-party payments and the CMS Request for Information

FOR IMMEDIATE RELEASE
Statement from LaVarne A. Burton, American Kidney Fund President and Chief Executive Officer
ROCKVILLE, Maryland (August 19, 2016) -- The August 18 Request for Information from CMS with regard to possible inappropriate efforts by providers of dialysis services to steer patients eligible for Medicare and Medicaid into marketplace insurance plans paid for by third parties raises two critically important but distinct issues:

First is the legitimate concern expressed by CMS of possible inappropriate steering of patients into insurance marketplace plans. We believe it should always be the patients’ choice to select the insurance plans that best meet their health care needs—and patients need to be fully aware of the pros and cons of each insurance option.
But second, it is critically important to emphasize that people with disabilities in general—and with end-stage renal disease (ESRD) in particular—should not be broadly excluded as a class from the insurance marketplace if they are unable to afford their health insurance premiums.

We agree with CMS that everything that can be done, should be done to prevent steering. But we do not agree that charitable assistance for the payment of insurance premiums is the problem—many low-income, chronically ill patients (many of whom are disabled) depend on charities to help pay for many of their expenses, including health care expenses. Cutting off this assistance at the behest of insurers would be particularly callous and would harm some of our nation’s most vulnerable people.
For 45 years, the American Kidney Fund (AKF) has provided charitable assistance to low-income dialysis patients to help them pay health care costs, including the insurance they need to access lifesaving care: Medicare Part B, Medigap, commercial, COBRA, employer group health and, since the passage of the Affordable Care Act, insurance marketplace policies, though they represent a small fraction of our patient assistance—just 6,400 of the nearly 80,000 people we currently help.
CMS has made very clear in the past that ESRD patients who are eligible for Medicare may enroll in the Marketplace, so long as they choose not to enroll in Medicare. When CMS provided this option for ESRD patients to enroll in the Marketplace, its intent could not have been to effectively exclude any ESRD patients who could not personally afford the cost of premiums. Even with subsidies, premiums can be prohibitively expensive for the population we serve—a population that is overwhelmingly unable to work because of their medical condition. AKF has always been a safety net for our nation’s low-income dialysis patients, and under the ACA, our premium assistance makes Marketplace plans an option for low-income ESRD patients who are fighting for their lives.
Some have asked why an ESRD patient who is eligible for Medicare would choose a Marketplace plan in the first place. Choice of insurance is a personal matter, but the reasons are many. First and foremost, Medicare alone is not enough to cover medical costs for people living with ESRD. A supplemental plan is necessary to cover the 20 percent out-of-pocket costs that have no lifetime cap under Medicare. In about half the states, insurers are not required to offer Medigap to ESRD patients under age 65, and ESRD patients in all states are prohibited by law from enrolling in Medicare Advantage plans which provide comprehensive coverage. For these patients, a Marketplace plan may very well be the best option to cap out-of-pocket costs and to achieve effective coordination of care. In other cases, even if Medigap is available, a patient may choose a Marketplace plan because Medicare does not offer family coverage, or because the person seeks better access to transplantation, or because the physician network offered under the Marketplace allows the person to continue seeing the same doctors they saw before they became ill. The reasons are many and cannot be distilled down into a black-and-white declaration that people with ESRD belong on Medicare.
For us, the patient is always the focus, and the effect on patients is what we care about—not insurance companies or dialysis providers, and not CMS—but the people those institutions are meant to serve. All ESRD patients must have access to the care they need to stay alive. The goals of preventing steering—with which we agree—and preserving choice for low-income patients are not mutually exclusive.
For nearly 20 years we have continuously reviewed our program to ensure that our guardrails protect its integrity. That’s even more important in the changing health care landscape. We look forward to working with CMS to assess whether there is inappropriate activity and if there is, how to best bring it to a halt. At the same time, this must occur without penalizing low-income ESRD patients by cutting off their access to an insurance option that, in some cases, may be their best choice.

MORE THAN A CONQUEROR LEGACY: BOOK REVIEW

MORE THAN A CONQUEROR LEGACY

A BOOK BY BILL HAUN

REVIEWED BY JAMES MYERS

ISBN-13: 978-1546992394

ISBN-10: 1546992391

Bill takes great care in telling us his story. This book with its spiritual confessions, videos, poem and even music tells the story in detailed, heartfelt honesty and precision. This is a story about a professional surfer, fit, healthy, competitive, who suffers from kidney failure and subsequent loss. It is in the Christian way that he responds to the drastic changes in his life that makes this book special. Imagine one day your ripping up waves in Florida, and days later you’re in the hospital getting a fistula installed and placed on dialysis due to diabetes followed quickly by End Stage Renal Disease.

Time passes, once, twice he is called for a new kidney, only to be turned away. But the third time, Bill gets THE CALL! He is reborn, transplanted, given back to us. 9 years and counting, Bill has been given new life. He calls this his New Year’s Eve Miracle, a gift from God. This blessing reminds Bill that he has overcome much in his journey; total blindness, comas, seizures, heart attacks and cancer. Prayers answered, Bill has become a world class Kidney/Organ Donation Advocate. He has done much to honor his New Gift of Life, Including:

· The Annual Footprints in the Sand Kidney Walk for the National Kidney Foundation of Florida;

· The Starfish Donor Mom Tribute Dinner;

· Helping Dialysis Patients Understand They are not Alone;

· Inspiration for Those That Have Just Received a Donated Organ;

· Establishing May 13^th as Florida Living Donor Day;

· Writing the Song, Surfer’s Story, Now in the Library of Congress;

· Responsible for the Dedication of the Hahn House Museum in Wisconsin;

· Responsible for the Dedication of the Great Sauk State Trial and Life River Walk to be completed in 2018.

Tuesday, January 23, 2018

PEDIATRIC KIDNEY PATIENTS: UNDER REPRESENTED?

Are our CKD/ESRD children an ignored, under represented, under reported group of kidney patients? Are they overlooked because the group is less in numbers than adults? Are they treated like second-class kidney citizens?

A Few Stats

· Pediatric ESRD Patients, less than 20 years of age, constitute a very small portion of the ESRD population, however some authorities say the total ESRD population, including pediatric patients may really be up to 50xs as much as estimated;

· In America, Children under 20 accounts for less than 2% of the ESRD population. Taking the United States Renal Data Systems Annual Report, (2017)(Chapter 2), Centers for Medicare and Medicaid Services, the current estimate of the ESRD population for children and adolescents is approximately 13.7 per million population as of 2015;

· As of December 31, 2015, the prevalence of children and adolescents, 0-21 years with ESRD was 9,672 or 99.5 per million population. An additional 10,251 adult survivors of the childhood onset of ESRD contributed to the 2015-point prevalence of ESRD of adults;

· The prevalence of 0-19 yr old CKD patients has grown 32% since 1990;

· During the period between 2011-2015, the proportion of missing, unknown or unspecified etiologies of incident was markedly high in the 18-21-year-old age group at 27%;

· Short stature is common in children and adolescents with ESRD; this affects the majority of young patients between the ages of 0-4 or approximately 52.7%.

· CKD in children is a devastating illness! The mortality rate for ESRD children receiving dialysis is between 30-150xs that of the general Peds population. The life expectancy for ESRD children 0-14 receiving dialysis is only 20 years of age. According to NAPRTCS, between 1996-2004, there were 3200 Pediatric ESRD Deaths!

WHEN I BECAME A BELIEVER

Let me tell you when I became interested in pediatric patients. There was a little boy on Facebook in a video his mother had made. He was approximately 6 years old, diminished size, wearing a diaper, sitting in a sink partially full of water, crying. Obviously, he had a major melt down. His Mom was trying to calm him. He was on dialysis and on a fluid restriction. He was thirsty and asking repeatedly for water. He did not understand why everyone could drink all the water they wanted, but not him. Flailing his arms, clinched fists, screaming. Demanding water. Mom finally got him to settle for a small amount of ice chips.

Sometimes you have to moved emotionally before you are moved intellectually, and that was the case with me. It slowly began to occur to me that not only did the pediatric CKD/ESRD/Dialysis patient have the some of the same issues that I had, but they had their own, unique difficult issues to face. How do you explain to a young child, an infant, a teenager that they are on fluid restriction and they cannot drink fluids in the same amount that their peers do?

How do you ask a teenage girl to comply with diet restrictions, her medications regimen after transplant, when she’d rather be around her friends? Recently, Vector Children’s Hospital reported that young kidney recipients are 60% more likely than adults to miss taking their immunosuppressive/steroidal medications.

THE CONFLICT BETWEEN WHAT THE EXPERTS THINK IS IMPORTANT AND WHAT THE MOMS THINK ARE IMPORTANT?

THE EXPERTS

There is a notable conflict between what issues the Experts from the NIDDK/NIH recognize as unique to Pediatric Kidney Patients and what Kidney Moms think are important issues. From the Experts, here are their issues:

1. Pediatric Patients Suffer From A Slower Growth Rate Than “Normal” Children.

a. Damaged kidneys slow a child’s growth by causing a mineral & bone disorder due to lack of Vitamin D and high levels of phosphorus. This in turn causes an imbalance of sodium, potassium and acid in the blood. As a result, growth slows to bring balance back.

b. This in turn leads to a decreasing appetite as a Kidney Kid may not be hungry or have the energy to eat. Poor nutrition leads to a much slower growth rate.

c. This in turn leads to a decreased production of erythropoietin leading to anemia.

d. This in turn leads to making an abnormally large supply of urine, further disrupting the body’s fluid balance.

e. The damaged kidneys prevent the body from correctly using the growth hormone.

f. This is why so many pediatric kidney patients end up on a feeding tube.

2. Pediatric Kidney Patients Frequently Suffer from Urinary Incontinence

a. Children with CKD may grow at a slower rate than their peers and the loss of bladder control which results in accidental loss of urine is common, resulting in isolation for the Pediatric Patient.

3. A Negative Self-Image/Low Self Esteem

a. Frequently, as a result of the diminished size, the feeding tube and incontinence, the Pediatric Kidney Patient develops a poor self-image.

4. Pediatric Kidney Patients Frequently Develop Relationship Problems

a. Pediatric Kidney Patients all too often have relationship issues. These conflicts would include the following groups:

i. Family members

ii. Making friends

iii. Participating in physical activities & sports

b. Even with a transplant, the side effects of the meds in children may result in a moon face from Prednisone, weight gain, acne, or facial hair, inhibiting social interaction.

5. Pediatric Kidney Patients Frequently Suffer From Behavior Problems

a. Peds Patients have been too often accused of not fitting in and as a result behaving badly.

6. Pediatric Kidney Patients Frequently Have Eating, Diet & Nutrition Issues

a. The big issue here is the failure to follow treatment regimens. This includes everything from adhering to a renal diet, taking medication, taking/showing up for dialysis, & adhering to a post-transplant medication schedule.

7. Pediatric Kidney Patients Have Learning Problems and Social Difficulties At School

a. The buildup of wastes in the body slow nerve and brain functions, inhibiting learning and making social interactions difficult. This in turn leads Peds Patients to:

i. Trouble concentrating

ii. Delayed language skills development---more slowly than their peers

iii. Delayed motor skills development

8. The Ongoing Conflict Between Schools, Parents and the Medical Needs of the Pediatric Patient

a. Pediatric Patients and their parents have constant issues concerning attending school as a result of illness and checkups in the form of numerous medical appointments and taking dialysis. For example, in center hemo dialysis is 3 times a week for 4 hours at a time. This does not include the time that it takes to hook up to the dialysis machine or to “hold” afterwards to stop the bleeding because of needles necessary to connect you to the dialysis machine.

b. Pediatric Kidney Patients and prohibited and/or limited in participating in school/extracurricular activities. This limits their ability to socialize and fit in with their peers.

c. There is a constant tension between the potential threats to expel, suspend or hold back the student patient as opposed to the responsibility to adjust and make reasonable accommodations under the Americans Disability Act.

d. Individuals w/Disabilities Education Act is a four-part piece of legislation that ensures students with a disability are provided with Free Appropriate Public Education that is tailored to their individual needs. Does the instruction specifically designed to assist the student affect the absences issue? The rescinded issues here are still under study for their impact.

e. These challenges increase when CKD becomes ESRD.

f. Most children with CKD who receive appropriate treatment can attend school, graduate from high school or go to college/vocational school if their families recognize the need for additional guidance and understanding.

9. Pediatric Kidney Patients Preparing to Entering The Workforce

a. Peds must overcome many barriers to obtain and prepare them find a job. They have to overcome such issues as their mall stature and appearance. It is difficult to find employers that understand kidney problems and the necessity for reasonable accommodations.

10. Unusual Problems For The Child ESRD Patient Lead To Unique Solutions But at Great Expense to the Parents

a. Experts have suggested the following type of experts to help resolve the above issues. The problem here is the expense and who picks up the costs. Those experts include:

i. Social Workers that help by finding:

o Support Groups In The Community

o Helping A Kidney Kid Rejoin School Activities

o Reducing The Stress Of Caring For A Child W/A Chronic Illness

o Help W/Applications For Medicare & Medicaid

o Mental Health Professional

o Financial Counselor

o Dietitian

THE MOMS (PARENTS AND CARETAKERS)

There is a marked difference between what the Experts Feel is important and the concerns of the “Moms” group. I have written these in ascending order to emphasis the impact of my conclusion.

12. Inconvenient Lab Times

Labs for the children are frequently taken at inconvenient times without considering the special needs of the child patient/mom. This was characterized as “not a family centered experience.”

11. The Equipment is not retrofitted for children

The equipment that is used for basic vital testing or dialysis is not properly fitted for children. The equipment is specifically manufactured and fitted for adult patients, and caretakers for children are forced to adapt. Machines like blood pressure machines, dialysis machines, dialysis chairs do not fit the children. The remark made to me was “practically everything is made in adult size.”

10. Research on Issues Involving Pediatric Kidney Patients has been Characterized by Parents as Poor

According to the Moms, there is very poor long-term research on children with kidney disease.

9. Drug Protocols Are Not Explained In A Clear Fashion

The caretakers for children have complained about the clarity of drug protocols, for example, steroids or no steroids?

8. Some Physicians Will Not Accept Medicare/Medicaid Payments

With Pediatric Kidney Patients, Medicare is not accepted by docs, forcing parents to have multiple health insurance policies on the child.

7. There Is Poor Mental Health Support for Pediatric Kidney Patients

Peds patients have mental health issues. There is poor psychological/psychiatric support for ESRD children. Statement made to me, “… for [a] group that doesn’t eat or urinate, [spends]extended periods of time in hospital [and] is missing school and social interaction,” there is surprisingly little support for these children.

6. The Normal Precautions for Adult Peritoneal Kidney Patients Are Frequently Disregarded for Juvenile Dialysis Patients During Training

There are poor training standards and care for young PD patients in the hospital. “Doing dialysis in an open room vs a private room with many other pediatric patients with unmasked provider is recipe for peritonitis.” There are no single care providers for connections and disconnections.

5. Travel to Pediatric Dialysis Centers Is Ridiculous

Dialysis centers for children are not as readily available as adult centers, particularly in rural areas. It is difficult to travel to pediatric dialysis centers. For example, in Indiana there is only 1 pediatric center, Riley’s Hospital For Children in Indianapolis. This is a 144 mile/ 2 ½ hour drive one way from Northwest Indiana where I live. Some children are helicoptered down. For many children, most dialysis centers are only available in major cities or children’s hospitals.

4. There is Very Poor Support for Feeding Skills and Nutrition is Approached in a ‘One-Size Fits All’ Method

The Moms teach us that there is poor support for feeding skills and nutrition for Pediatric Kidney Patients. The needs of the individual kids are frequently not addressed. Nutrition instead is approached as a one-size-fits all, when individual training and treatment is needed. There should be a balance of enough protein to stimulate growth, while protecting the kidneys

3. Most Pediatric Patients are Tube Fed

Feeding therapy is pretty much a done deal as a result of poor support. The majority of renal kids are tube fed to keep up with high intake necessary to support them & for the intake of meds.

2. There are no Pre-Set Appointments Like in Adult Dialysis

According to the Moms, there are no preset appointments without multiple choices. Makes it very difficult to plan.

1. The Moms Feel There are Too Few Support Groups and They Have Requested a Major Kidney Advocacy Group, Like the NKF, Undertake An Initiative To Represent Their Children

The Moms complain that their children are not adequately represented. There are too few pediatric support groups. The Moms feel that a major national group like the NKF or AAKP take an Initiative to help these children.

CONCLUSION

It is interesting to review this matter for Pediatric Kidney Patients. As Kidney Patients, they are truly an overlooked or neglected group. This results in problems that may follow them out of childhood and into adulthood. This can be a life sentence for merely becoming a Kidney Patient at a young age. It is too great a price to pay for a circumstance largely out of their control. And with all their issues, what is it that they ask for? They ask only to be represented; for advocates. If we truly represent all kidney patients, how can we overlook the Ambassadors of our future?