Losing disability insurance is a possible nightmare for those with CF

Original article on CBS This Morning

Megan Willis lives with cystic fibrosis, a deadly disease that causes extensive lung damage. The 22-year-old said she spends around six hours a day administering medications and therapy, and that the disease frequently causes infections and other complications.

With the condition, Willis qualified as a disabled adult for Social Security benefits on living expenses. About 10 million other Americans too disabled for work also get the stipend, called Disability Insurance. More importantly, having Social Security gave Willis access to Medicaid, which paid her annual health care costs of over $100,000.

But in March, Social Security sent her a letter saying her health had improved since the last review of her case and that she was able to work. This was news to Willis.

“My health has only gotten worse in the past year,” Willis told CBS News chief medical correspondent Dr. Jon LaPook.

Despite that, her Social Security benefits were terminated and she lost Medicaid. Since she lives in Florida, one of 14 states without expanded Medicaid, she had no other way to get it. Her family can’t afford private insurance.

While the medical bills mounted, she began law school.

“I don’t want to just stay stagnant and you know, depressed, looking at the four walls of my room,” Willis said. “I want to move up in the world even if you know it’s going to be hard.”

Willis also contacted attorney Beth Sufian, who runs the Cystic Fibrosis Legal Hotline and has cystic fibrosis herself. Sufian said, “We’ve seen a five-times increase in the number of people with cystic fibrosis that have been reviewed in the past 18 months. And we think that Social Security is targeting young people with chronic illness in an effort to reduce the number of people getting benefits.”

By law, disability claims are periodically reviewed to see if recipients are still eligible for benefits. Over the last decade, to combat a backlog, full medical reviews quadrupled to an expected 900,000 this year.      

“It really is a life or death situation for all of our clients when they lose their benefits,” Sufian said.   

In Willis’ case, Social Security ultimately reconsidered and she was able to get back on disability in November. She was hospitalized around Thanksgiving, and Medicaid kicked in and the bills were covered, her mother Wendy said.

But Willis’s lawyer still has about 200 pending cases of people with cystic fibrosis who are first getting reviewed and those who are appealing.

***

Losing disability insurance can have devastating consequences for those with CF. Our very own Vice President, Beth Sufian, helps many individuals get on and stay on disability. For the full story go to https://www.cbsnews.com/…/what-happens-when-someone-loses-…/

Vote Like Your Life Depends On It! It Does.

By Beth Sufian, JD

Vote like your life depends on it Tuesday because if you have cystic fibrosis it does!

I did not think I needed to write an article about how important voting on November 6th is to people with CF, but last week I realized I was wrong.  I had discussions with some people with CF who did not understand the importance of the election to the CF community. I started to explain that if there are no changes in who is serving in Congress, the Affordable Care Act will be repealed in 2019.

We saw how close Congress came to repealing the Affordable Care Act (“ACA”) last year. Senator John McCain was our hero when he voted against the repeal of the ACA. Senator McCain lost his own battle with cancer this year and he will not be able to save us again. To be safe we need 3-4 new Senators and 23-26 new members of the House who will protect the ACA.

Everyone with CF and everyone who loves a person with CF should be spending the next two days getting out the vote for candidates who will protect our ability to access the care and the medication we need to fight CF.

If the Affordable Care Act is repealed it will become impossible for large numbers of people with CF to access the health insurance policies or government programs we need to pay for our care and the expensive medications that are improving the lives of children and adults with CF.  Last week we heard from the Republican majority leader Senator Mitch McConnell who said that in 2019 he pledged to repeal the Affordable Care Act, to both reduce the number of people who are eligible, and to restrict coverage under Medicaid and Medicare.

Many in the CF community mistakenly believe that the ACA does not apply to them because they have a private health insurance policy. The protections of the ACA apply to all private insurance policies. Here are just some protections the ACA provides to people with CF.

  1. The right to keep a parent’s health insurance coverage until a young adult turns 26.
  2. No lifetime caps on coverage.
  3. A maximum out of pocket amount.
  4. No pre-existing condition exclusions.
  5. 45 services that must be covered.
  6. The option for a state to expand Medicaid to low-income adults.

Without the ACA all of these provisions and many more protections go away.

Recent data show that at any given time at least 50 percent of children and adults with CF are enrolled in Medicaid.  Even if you have private health insurance, the loss of Medicaid by people with CF will still affect you. If 50 percent of our population does not have coverage for medication or treatment it will be impossible for companies and health care providers to deliver medications and treatment to the rest of us.  There will not be enough people who will be able to pay for care and medication. All people with CF will be negatively affected if the ACA is repealed.

If you have made other plans on November 6th I urge you to reschedule. There is no other event that should take precedence over the fate of health care for those with CF. We should all be coming together to make sure when we wake up on November 7th we know we did everything we could to protect the rights of people CF.

We ALL need to be getting out the vote on Tuesday. What does that mean? We need to be reaching out to friends and family members and explain why this election is so important to the CF community.

We need to reach out to campaigns who need our help block walking, phone banking and texting to get voters to the polls. We need to make sure everyone we know has a way to get to the polls. Many important races will be won by only a few votes. Every hour you spend getting out the vote now counts, there is no going back after the election is over.

This is the most important election of our lifetime.

Please join me in assuring that we have done everything we can for everyone in the CF community to continue to have the legal right to access insurance coverage. So many worked so hard to develop the excellent CF Care Center system. So many have spent their lives researching and discovering medications to help ease the burden CF places on us. Let us honor the memories of those who have lost their battle with CF by making sure we explain to friends and relatives why their vote on Tuesday is so important.

On Tuesday, I will be available all day to answer questions about the Affordable Care Act, Medicaid or Medicare coverage or to connect people to the information they may need to vote. Please call me at 1-800-622-0385 if I can help. I am acting as a private citizen on Tuesday and not as a member of any organization. I hope my next post will be of me dancing in the street late Tuesday night celebrating all of our efforts to make sure that everyone with CF has a bright future.

You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

RARE LUNG DISEASES PATIENT EDUCATION DAY ON CYSTIC FIBROSIS, CHILDREN’S INTERSTITIAL LUNG DISEASE AND PRIMARY CILIARY DYSKINESIA

REGISTER NOW AT:
https://attendee.gotowebinar.com/register/6993341835513746691

This event is co-sponsored by the American Thoracic Society, the Cystic Fibrosis Foundation, the Children’s Interstitial Lung Disease Foundation and the Primary Continue reading You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

BREAKING NEWS: AN ANALYSIS OF THE NEW SOCIAL SECURITY RULES FOR CYSTIC FIBROSIS.

By Beth Sufian, JD

Social Security has issued new rules regarding Social Security benefit medical eligibility criteria for people with CF.  The new rules will go into effect on October 7, 2016.  The following blog post is a summary of the changes and some important things people with CF should know about the changes. A more detailed Continue reading BREAKING NEWS: AN ANALYSIS OF THE NEW SOCIAL SECURITY RULES FOR CYSTIC FIBROSIS.

Ask Your Questions to CF Roundtable

Do you have questions for our CF Roundtable columnists?

The US Adult CF Assn (USACFA) publishes CF Roundtable. USACFA’s directors consist of all adults with CF. Some of our columnists, although not directors, Continue reading Ask Your Questions to CF Roundtable

Social Security Administration (SSA) to Host Special Teleconference for Cystic Fibrosis Community about Proposed Changes to Disability Benefits

Friday, May 10, 2013 (1:00 – 2:30 p.m. ET)
The Social Security Administration (SSA) will host a special teleconference for the cystic fibrosis community on Friday, May 10 about proposed changes to disability benefits. https://www.federalregister.gov/articles/2013/05/07/2013-10702/medical-criteria-for-evaluating-cystic-fibrosis Continue reading Social Security Administration (SSA) to Host Special Teleconference for Cystic Fibrosis Community about Proposed Changes to Disability Benefits

Social Security Benefits – Guest Blog by Beth Sufian, JD

There are any people with CF who receive some sort of monthly Social Security benefit. The Social Security benefit gives the person a monthly cash payment to help with living expenses. Most people with CF want SSA benefits because they qualify for Medicaid or Medicare if they receive the SSA Continue reading Social Security Benefits – Guest Blog by Beth Sufian, JD