Nonprofits, financial assistance programs are increasingly necessary for chronic disease patients

6.13.16

As insurance companies increasingly refuse to cover treatment for people with chronic illnesses, a growing group of nonprofits, social workers and volunteers has stepped up to help people fight for and maintain their health care coverage so they can survive chronic disease.

Here are three organizations recently in the news that are going above and beyond to help protect consumers with chronic conditions.

1. Financial ‘navigators’ move to the front lines to help cancer patients survive financially as well as medically

Scott Steiner of Grand Rapids, Michigan, was prescribed a cancer drug that his insurance refused to pay for. A warehouse manager for a publishing company, Steiner and his wife, a part-time nurse, only made $30,000 each year; they couldn’t afford the drug on their own.

“We still had six kids at home — how were we going to come up with that kind of money?” Steiner told Laurie McGinley of The Washington Post. “We couldn’t re-mortgage the house because it had already been re-mortgaged. I wouldn’t have been able to take the medication. We would have had to just trust in the Lord.”

Lucky for Steiner, Dan Sherman, an oncology social worker at Mercy Health Lacks Cancer Center, helped him land a free supply of the essential cancer drug. Even so, “it was a scary brush with ‘financial toxicity,’ as researchers call the mix of economic stress, anxiety and depression that cancer patients often endure,” McGinley wrote.

Social workers like Sherman are necessary as millions of Americans struggle with increasing out-of-pocket expenses from their insurance companies, which are shifting costs for treating people to consumers, especially those with chronic conditions.

2. Seattle CENTS program matches cancer patients with volunteers to help manage expenses and insurance needs

With cancer costs for patients on the rise, volunteers are also stepping up to help people navigate the health care system, looking to help them get the assistance they need, whether from pharmaceutical companies, the government, foundations, hospital assistance programs or nonprofits.

In Seattle, a group helping with this is a nonprofit called CENTS, which reportedly matched 25 recently diagnosed cancer patients with people willing to help them manage their expenses and insurance needs.

Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research at the Fred Hutchinson Cancer Research Center in Seattle, told The Washington Post that “someone needs to step in, assess patients’ financial risks and do something to manage their finances.”

Karen Overstreet, a retired federal bankruptcy judge who co-founded CENTS, said the program can not only help patients stay above water financially, it can actually increase their chances of surviving their battle with a chronic disease.

“People who feel safe financially and physically are going to have a better [treatment] result,” she told the Post.

3. Pediatric Assistance Fund helps parents and children when insurance coverage isn’t enough

Alicia Bell was not only shocked when her daughter, Karis, was diagnosed with type 1 diabetes, she couldn’t believe when her insurance company wouldn’t pay for the diabetic testing supplies her daughter would need as a result.

Bell was able to find a group to help close the gap, putting lifesaving medications within reach, helping people to pay for their prescription drug copays, deductibles and insurance premiums so they can access the care they need to survive. The group was HealthWell, a nonprofit whose Pediatric Assistance Fund was designed to provide financial assistance for children living with chronic conditions.

Unfortunately, we know that insurance companies are increasingly targeting nonprofits and assistance programs for those in need, including by targeting them based on an alleged financial connection (e.g., pharmaceutical companies providing the free lifesaving supply of cancer drugs for Scott Steiner) or by rejecting premium payments from groups such as American Kidney Fund.

It’s not just these groups coming under attack. Others we’re concerned about include CancerCare and
National Organization for Rare Disorders (NORD), which offer assistance and financial aid. Please join us and help to protect patients with chronic diseases.