The Chronic Disease Coalition’s top stories of 2018

12.28.18

In 2018, the Chronic Disease Coalition fought alongside patients, doctors and health care experts to ensure patients were empowered to fight for access to medical care. The year was full of highs and lows that were captured in our top 12 stories of 2018.

1. Patient Advocate Spotlight: Sue Jackson

Sue Jackson and her two sons battle chronic fatigue syndrome (CFS). After years of fighting for her sons to have reasonable accommodations at their local schools, Jackson spoke out about the importance of advocacy and having access to disease-specific resources.

“Each year there would be someone on staff who would help. I truly believe I made myself sicker by trying to advocate for my sons,” said Jackson. “When my sons were in high school, we learned about educational advocates and brought one into a meeting with us. It was like waving a magic wand – the staff was stumbling over themselves to help us.”

Read more here.

2. Chronic Disease Coalition launches Ambassador Program

In 2018, the Chronic Disease Coalition launched our Ambassador Program and began our work with active advocates to help advance patients’ interest in their neighborhoods, communities and states. The CDC Ambassadors represent a wide diversity of diseases ranging from arthritis to lupus, to endometriosis and more. With the help of the Ambassadors, we have raised awareness, educated individuals and lawmakers and passed meaningful policies.

If you’re interested in becoming an Ambassador, click here.

3. 3 tips to help make sure your voice is heard

Did you know “Modern Family” star Sarah Hyland battles kidney dysplasia? Like many patients, Hyland has experienced the frustration that comes with prolonged diagnoses and feeling like no one understands your condition.

“For those who are chronically ill and in chronic pain: Have you had the experience of doctors not listening to you? If so, how do you not tear their heads off with your bare hands,” questioned Hyland.

Make sure your voice is heard: Learn more about some of the CDC’s advocacy tips in our blog.

4. Scott’s Day with Crohn’s Disease

While the Chronic Disease Coalition’s Executive Director Scott Bruun battles several chronic diseases in real life, Crohn’s disease isn’t one of them. But Scott participated in a program that simulated a day in the life of a Crohn’s patient.

“For me, it was just pretend. For thousands of people suffering with this disease, these consequences were all to real,” explained Scott after the simulation.

Read more about Scott’s day with Chron’s Disease here.

5. Numerous patient groups express concern with California S.B. 1156

California lawmakers considered dangerous legislation that would have jeopardized patients’ access to charitable assistance programs – charities that help patients afford their health care. The SEIU and insurance-backed legislation would have placed several unnecessary barriers in front of patients trying to access lifesaving care, forcing them through a lengthy review process and requiring them to apply for Medi-Cal even if they were satisfied with their current commercial plan.

With the help of other patient groups, the Chronic Disease Coalition was able to defeat the bill. Read more about the harmful legislation here.

6. Dying mother fights UnitedHealthcare for coverage of lifesaving treatment

At the Chronic Disease Coalition, we don’t believe patients should be denied care, let alone lifesaving treatment. Yet, amidst her battle with colon cancer, Erika Zak was forced to fight UnitedHealthcare for access to an organ transplant – the only treatment that would save her life.

“[UHC’s] handling of my case has been plagued by unnecessary delays, incomplete responses, inept scheduling, contradictory statements, and worst of all repeated factual errors regarding my medical history,” Zak wrote. “Most importantly, decisions based on inaccurate information and analysis have already delayed my listing and transplant two months.”

Read more about Zak’s experience here.

7. Cities and states recognize Chronic Disease Day

On July 10, the Chronic Disease Coalition joined millions of people in celebrating Chronic Disease Day. Seven out of 10 individuals in the United States will lose their life to a chronic condition, and this day provides an opportunity to educate others, discuss issues around access to care and promote self-care.

Learn more about Chronic Disease Day here.

8. New Missouri law addresses Anthem’s harmful emergency room policy

In 2017 Anthem Blue Cross Blue Shield rolled out a controversial program that based coverage of a patient’s visit to the emergency room on their final diagnosis rather than their symptoms. Anthem denied nearly 12,000 claims only a few months after instituting this program, leaving patients with high medical bills.

Missouri leaders counteracted this program with passage of policy that requires insurers to cover emergency room visits based on the patient’s symptoms. Insurers are also required to have a board-certified physician review any denials, helping ensure patients are protected from greedy insurance companies.

Read more about Missouri’s new law here.

9. Chronic Disease Coalition joins over 200 other patient organizations protesting changes to Medicare Advantage plans

Step therapy practices have major consequences for patients who aren’t able to access their prescribed medication and are instead forced to try and “fail” on cheaper, often less effective treatment. In August, The Centers of Medicare and Medicaid Services (CMS) issued guidance that would allow Medicare Advantage plans to implement dangerous step therapy practices. The CDC joined other organizations in sending a letter to Congress protesting these changes.

Read more here.

10. 3 ways insurance companies punish mental health patients

While the Mental Health Parity law is supposed to enforce equitable treatment for mental health patients, insurers continue to find loopholes. From higher out-of-pocket costs for patients to burdensome prior authorization requirements, mental health patients are still forced to fight for parity.

Read more about the discrepancies in care patients with mental health conditions face here.

11. Insurance discrimination spreads to copay accumulator programs

Copay assistance programs provide a critical safety net for patients struggling to afford their health care. Unfortunately, a new form of insurance discrimination has resulted in the advent of copay accumulator programs.

These programs prohibit charitable copayments from counting toward a patient’s deductible, allowing insurers to extend the duration of deductible payments and pad their pockets. Read more about this new trend here.

12. 5 things CDC Ambassadors are thankful for

In the spirit of the holiday season, the CDC asked our Ambassadors to share what they are thankful for.

“I’m grateful for the new perspective being ill has offered me. I’ve learned not to worry so much about the little things that don’t truly matter, like a perfectly kept home, empty laundry baskets or dust-free surfaces,” explained Kristin Klontz. “I am also thankful that I am learning self-love. As a wife and mother, it’s easy to get lost in taking care of everybody else. I’m learning to take care of myself without feeling guilty – it’s not selfish, it’s smart.”

Read more about the reasons CDC Ambassadors are thankful here.

At the Chronic Disease Coalition, we are grateful for the opportunity to get to work passionate groups, patients and advocates throughout the year. From beating down harmful legislation to empowering patients to speak out to educating the public about the reality of living with a chronic condition, we are proud of all we were able to accomplish together in 2018. Join us in celebrating 2018 and ringing in the New Year as we continue to fight for patients’ rights.