We Did It!
After four years of work, Connecticut now has a law prohibiting co-pay accumulators. That means insurance companies must apply any co-pay assistance to the patient’s deductible and out-of-pocket maximum requirements.
Many thanks to Governor Ned Lamont, who signed the bill into law on June 2, 2021. It takes effect January 1, 2022.
To learn more click here
We’ve published Navigating Insurance for Connecticut Zebras. Check it out here!
In light of the current coronavirus COVID-19 pandemic, this page is a Twitter list of scientists and science journalists working on COVID-19.
The Immune Deficiency Foundation’s COVID-19 information page is here
I think I may have the COVID-19 infection. What should I do? Click here
CT Zebras is a labor of love designed and written by Patricia Carroll RN-BC, RRT, MS. She is a Connecticut registered nurse who was diagnosed with a primary immune deficiency (PI) as an adult.
Pat had to give up her clinical practice and she found she missed being able to help others as she had for her entire career as an emergency, critical care, and home health nurse.
She has been a volunteer with the Immune Deficiency Foundation, (IDF). She currently works with RARE-CT, the CT Rare Action Network, particularly on local public policy and legislative issues. She also works with Patients Rising Now, a non-profit organization that works with patient advocates at community, state and federal levels to support reforms and legislation to enhance access people with chronic and life-threatening illnesses need to get their expensive medications and healthcare.
We are grateful to the Health-e-Voices Impact Fund of the Community Foundation of New Jersey. They support innovative efforts by health advocates to serve and assist patient communities. Their grant support has made this site possible.
Why Zebras?
In medical school, students learn about all the uncommon, rare diseases they may see a few times during their career. A common reminder is,
“When you hear hoof beats, think horses, not zebras.”
That means they should focus on the common conditions when making a diagnosis, not the rare things they’re learning about.
Sometimes, though, physicians need to look for a zebra. People living with PI are the zebras of the medical world. So IDF says THINK ZEBRA.
Unfortunately, the average time from initial symptoms of an immune deficiency to diagnosis is about seven years. So, we need to remind care providers that we zebras are not all that rare. The International Union of Immunological Societies has identified more than 350 types of immune dysfunction. They can be genetic (you have an abnormality in one or more genes) or intrinsic (originating within the body) defects.
Experts estimate 250,000 people are diagnosed with a primary immune deficiency in the U.S. That’s about 1 in 1200 persons. That translates to more than 3,000 people in Connecticut! However, the NIH believes that could be underestimating the number of people affected by half. PI can now be diagnosed in newborns (through screening just after birth). But, it can also occur in school-aged children, young adults, those in middle age and retirees. It does not discriminate.
We’re Better Together
Managing a diagnosis of primary immune deficiency is complex and emotionally draining. It requires replacement of the immune factor that is missing or not working. This means costly infusions anywhere from weekly to monthly.
Having been through the process and being an experienced RN, Pat believes she can shift the focus of her practice. She has gone from caring for patients in the emergency department to helping those with primary immune deficiency in Connecticut as they embark or continue on their journey with this challenging condition.
