3/19/2019 by Share Your Story

For the Sake of the Patient – Kidney Awareness

The Kidney Cancer Research Alliance and Patients Rising are raising awareness in this Kidney Cancer Awareness month about the need for increased research funding.


According to the American Cancer Society, in 2019 in the United States there will be over 70,000 new cases of kidney cancer or renal pelvic cancers. About 60% of those will be in men. More than 14,000 of these people will die.

The Kidney Cancer Research Alliance (KCCure.org) is a grassroots organization of patients, caregivers, doctors and medical researchers dedicated to eliminating suffering and death due to kidney cancer through increased funding to accelerate research that will lead to a cure for all patients and prevent future kidney cancer diagnoses.

KCCURE.ORG provides easy to find resources for patients or the caregivers of patients, with kidney cancer. These include:

  • An array of kidney cancer support groups
  • A detailed breakdown of the stages of kidney cancer
  • An easy to understand list of treatment options
  • Resources for research funding
  • Patient stories and tributes

Kidney cancer is a rare disease. The term “rare” is applied to any conditions that affect fewer than 200,000 people in the United States.

KIDNEY CANCER RESEARCH FUNDING VERY LOW

KCCure and Patients Rising both work towards making the needs of the patient central to all discussions about kidney cancer. We raise awareness of the disease, not for its own sake, but to attract more funding to kidney cancer research and educate patients so they are better empowered to get what they need out of healthcare. In 2017, less than half of one percent of all research funding was dedicated to kidney cancer.

STEP THERAPY SLOWS THE PATH TO WELLNESS IN KIDNEY CANCER

Step therapy (aka fail first therapy) limits access to treatments. This not only puts patients’ immediate health at risk but potentially creates long-term health care issues. Fail first policies force individuals to try the treatment that is preferred by the insurance company (often an older, cheaper medicine) rather than the medicine prescribed by the physician.

By empowering patients and their caregivers, we hope to make the treatment-path process between the patient, their doctor and their insurer quicker and more efficient. The objective is to increase quality of life and reduce mortality among kidney cancer patients.

PATIENT STORIES


the Esfellers

The Esfellers

In August of 2018 Laura Esfeller shared her story with Patients Rising.

“While kidney cancer is uncommon in adults under the age of 45, it’s not uncommon for teens and young adults to be diagnosed with metastatic disease because their diagnosis has been delayed.”

Read her full story here.

 


chris rogers

Chris Rogers

Just this March Mary Rogers shared the story of her husband Chris with KCCure.

“I will never forget the month of December 2016. Chris urinated blood and after a mis-diagnosis and a few scans we later found he had a 9 cm mass on his kidney. Chances were high that it was kidney cancer. He was 41 at the time, in good health, and never had any health issues besides a cold or so.”

Read her full story here.

kathy and john cunnius

Kathy and John Cunnius


Kathy Sweeney Cunnius shared the story of her husband John with KCCure.

“When Dr. Russo met my husband, he was very apprehensive about doing the surgery.  His tumor was 6 cm and grew into the wall of his back.  Also, John was skinny and weak from the hip surgery. They told us to come back in two weeks to hear our options, but surgery might be out because John was too weak to have it.”

Read her full story here.

 


Kidney cancers are often found too late. Treatment is possible but the longer it is before detection the longer it is before treatment, and that reduces the success rate of treatments. They also point to the need for more research funding for things like early detection. It can’t remain the way it is.

SO HOW CAN YOU HELP

Donations to the Kidney Cancer Research Alliance go towards research. In fact, all donations to KCCure go toward providing financial support to scientists via peer reviewed grants to advance kidney cancer research.

Donations to Patients Rising go towards the programs we have established that provide support and education to people with chronic and life-threatening illnesses. Programs like Ask Us Anything, Voices of Value, Patients Rising University.


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