Updates to Cystic Fibrosis Conditions Qualifying for a Wish

Authored by wish.org and submitted by goodboinoban

Given the ongoing life-changing advances in cystic fibrosis, beginning in January 2024, cystic fibrosis will no longer automatically qualify for a wish. CF will be eligible when accompanied by additional complications or factors that make the current situation critical. To learn more about how to refer a wish, please visit wish.org.

At Make-A-Wish, we celebrate medical advancements and improved treatments for the wish kids we serve—children diagnosed with a progressive, degenerative, or malignant condition that is currently placing their life in jeopardy. These advances also allow us to regularly evaluate the equity of the eligibility criteria for a wish.

Given the ongoing life-changing advances in cystic fibrosis research and treatment, Make-A-Wish is transitioning our CF eligibility to qualify for a wish on a case-by-case basis. This means that CF will no longer automatically qualify for a wish and will be eligible when accompanied by additional complications or factors that make the current situation critical.

This decision was not made lightly, and we understand it may result in some frustration and disappointment. As with all wish referrals, we will carefully consider any CF request that a family member, legal guardian, medical professional, or potential wish child believes meets our guidelines.

To ensure changes like this to our eligibility criteria are applied as equitably as possible, we seek the ongoing guidance of 19 physicians from diverse backgrounds, who volunteer on our National Medical Advisory Council, as well as some of the more than 200 Chapter Medical Advisors who support our chapters in local communities nationwide.

Cystic fibrosis is undoubtedly a critical illness, and, like many other critical illnesses, the course of the condition varies widely from person to person. According to the National Institutes of Health, “CF does not follow the same pattern in all patients but affects different people in different ways and to varying degrees.” Some CF patients live well into adulthood, and medical advancements and improved treatments have significantly improved the quality of life and extended the average life of CF patients. Based on 2021 CF Foundation Patient Registry data, the current life expectancy for CF patients born between 2017 and 2021 is 53 years, up from 38 years a decade ago.

Because of this, wish referrals based on CF will be reviewed case-by-case as of January 1, 2024. This is consistent with our approach to other critical illnesses that do not automatically qualify for wishes because the course of the condition varies from person to person. These illnesses include certain types of cancer, epilepsy, sickle cell, and heart disease.

CFFighter on March 16th, 2023 at 03:36 UTC »

I have CF and was able to do one in 2002. I was nowhere near "end-stage" and not even close to even being listed for transplant, but was recommended by a family friend/ MaW volunteer to apply for a Wish simply due to having CF as they included CF at any stage a couple years earlier. Went to the Attack of the Clones premiere, met George Lucas, toured Skywalker Ranch and the Lucasfilm Archives, and toured ILM. I'm 38 now and pretty stable at low 60s/high 50s for my lung function. I may never need a lung transplant my CF specialists say. I'm so happy for the advances in medicine and kids possibly never having to live with the fear of an early death or transplant. Now my biggest struggles are CF Related Diabetes and CF Liver Disease (which has progre.ssed to a new stage in the last few months, but nowhere near end-stage/transplant)

Maximum_Bear8495 on March 16th, 2023 at 01:26 UTC »

One of the nicest people I ever knew died from CF senior year of high school. Rest In Peace DQ, you fucking rocked

Stabfacenotback on March 15th, 2023 at 23:35 UTC »

A sorority sister from 1990's was never expected to live past 25. She signed up for experimental treatments for her CF. She became a well known advocate and leader of her local CF organization.

She barely lived to see her double lung transplant. It worked! She lived to right about age 50. The anti-rejection drugs poisoned her kidneys in the end. RIP, a great warrior.

I'm sure she sees her contribution to this great feat.