Giving Good Days Fall Newsletter- 2020
Meet Kim Ryle
She's Here to Help
Finding out that you or a loved one has a life-altering condition and then realizing the cost of treatments and related expenses are unaffordable is a terrible experience. Serious illnesses come with many budgetary concerns that threaten financial stability.
“Knowing that we take that stress and worry away for people and their families is so much of a reward,” says Kim Ryle, a Care Navigator on the Special Programs team at Good Days for more than seven years. “When a parent asks, ‘We need to see the top specialist in the country for our child but how are we going to get there?’, they can turn to us,” says Kim. “We cover the cost of flights and make sure a guardian can go along too. Good Days is there every step of the way.”
In addition to co-pay assistance for out-of-pocket costs of critical medical treatments, Good Days goes the extra mile to make sure that the people we serve are covered, whether that means help with insurance premium costs, paying for diagnostic tests, or arranging car and air transportation to and from life-saving surgeries.
“As a Care Navigator, we even help facilitate calls for patients with their health providers or insurers if they are nervous and want to make sure all their questions are answered,” says Kim. “It doesn’t matter who picks up the phone at Good Days, we are all ready to help. Sometimes it is with uploading a document, other times with arranging gas money and hotel accommodations. We are constantly bouncing back and forth with tasks to help patients. It can be a challenging position at times, but I enjoy all aspects of it.”
Kim is a self-described ‘big nerd,’ who loves sci-fi and fantasy fiction. She grew up in Kansas City, MO and earned a Bachelor of Science degree from Texas A&M University, where both of her parents also went to school. She enjoys spending her free time with her friends, family and 10-year-old cat, Callie.
Recently, Kim’s team has been supporting new enrollments for the Covid-19 Emergency Relief Fund. She has had to adapt as Good Days staff transitioned to work from home to ensure the safety of our own team members during the pandemic.
“Once I had the mental shift that I could continue to chat online and by phone with my fellow team members about our patient’s needs, I got used to it,” says Kim. “There are some families who we aid with their co-pays, insurance premiums and their travel expenditures. We may need to speak with them at least monthly to plan around upcoming tests help them get ready to receive a transplant. My job is extremely rewarding. I don’t see myself going anywhere else anytime soon.”
KEY QUARTERLY CONTENT
With only a few more months left in 2020, we want to remind you that 2021 Re-Enrollment will be opening soon. Patients will receive letters with information about how to use our website (https://www.mygooddays.org/reenroll/) to re-enroll for assistance. Due to high call volume during this time, we encourage you to utilize our online resources.
As always, the Re-Enrollment process can be completed by the patient or the patient’s advocate. Once the Re-Enrollment process is complete, an immediate 2021 Re-Enrollment status will be provided.
SUFFERING THE SILENCE
For many people who have chronic illness, the social stigma that surrounds living with a disease can be as difficult to cope with as the illness itself. Oftentimes, a person who does not look physically sick or disabled may be suffering behind the scenes.
“This stigma can leave chronic illness patients feeling invisible, dismissed, and silenced,” according to the founders of Suffering the Silence (STS), a 501(c)3 organization that uses art, media and storytelling to raise awareness about the life experiences of people who have chronic illness or disability.
The video and photography projects are produced by a team of women who all have personal experiences with chronic illness. Earlier this year, they released a popular new short documentary series that explores the impact of chronic illness on the lives of five people who live in Los Angeles, California. The series, titled ‘Trust Me, I’m Sick,’ is free to watch on YouTube and explores how Lupus, HIV and other chronic health conditions shape people’s relationships, careers and expectations for the future.
By illuminating the lives of people who live with chronic and rare conditions, STS is helping to change how others view life with chronic illness. Good Days partnered with STS to create a series of short videos for Chronic Disease Day earlier this year that tell stories from real people who had to change their lifestyle due to chronic disease and became patient advocates in the process. We hope these stories of hope and encouragement from people who have personally suffered from chronic conditions will help others adopt healthier habits.
“We empower patients, friends, and family members to speak out and share their stories. This act of sharing helps those who are suffering to become self-advocates and to find support and understanding. It will also help to transform the medical and social perception of those living with these conditions,” says Ali Cashel, one of the organization’s founders.
To see more of the group’s storytelling projects, visit SufferingTheSilence.com or follow them on Facebook.
A LETTER FROM THE PRESIDENT
Across the country, those of us who are immunocompromised have spent the better part of 2020 taking extra care to socially distance and avoid situations that could lead to greater risk of contracting Covid-19.
We miss hugging our closest family and friends and visiting public places to spend time with loved ones. Thankfully, this pandemic has also reminded us of the importance of community. With so many examples of individuals delivering groceries for people at-risk, drive-by birthday and graduation celebrations and donations being raised for families having financial hardships, I am heartened by the large and small ways in which we can help one another.
Good Days has not let the challenges of operating during a pandemic get in the way of our commitment to patients in need of access to care. Our Care Navigators remain actively in touch and provide personal support across all our assistance programs. Our Covid-19 Emergency Relief Funds continue to help cover the costs of essential needs, including food and rent, for people who have chronic or life-altering diseases and have contracted the virus and need access to treatments, or are experiencing economic hardship due to the pandemic.
This Summer, more than 30 U.S. governors took time out of their busy schedules to join us and raise awareness for Chronic Disease Day on July 10th, which highlights that 7 out of the top ten deaths annually in the United States are due to chronic disease. Of the 7 causes, the majority are from preventable chronic illness. Each year we raise awareness on ways to reduce preventable chronic conditions as well as to support individuals with unpreventable conditions. We are grateful to the thousands of people who tuned into our virtual broadcast event featuring Dr. Eliseo J. Perez-Stable, the Director of the National Institute on Minority Health and Health Disparities. His remarks remain available for viewing on our Facebook page along with additional excellent content to keep you informed during these challenging times.
With the Fall season already upon us, we hope that you will enjoy these final months of 2020 and keep a positive outlook for the future. As always, thank you for believing in our mission and helping to make our work possible. We are incredibly grateful for your support.
Clorinda Walley, President