By John Otrompke
The
eleventh annual Dancing For The Survivors event was held tomorrow, Friday,
October 13, at The Mint in Lathrup Village, Michigan.
“One of our dancers is Lisa McCall,
a breast cancer survivor who was the dance choreographer for Aretha Franklin,”
said Molly MacDonald, founder and CEO of The Pink Fund, based in Southfield,
Michigan. The goal was to raise $300,000 from the event, she said.
The Pink Fund’s work alleviating
the financial toxicities suffered by breast cancer patients was also
highlighted this month by the Detroit People Mover, in partnership with Priority
Waste Management. It was the light rail train’s first public service
announcement.
“The Pink Fund is totally unique;
they provide financial assistance for 90 days for people going through breast
cancer, not for your co-pay or your insurance deductible, but for life bills
like your car note, mortgage and electric bill,” said Heidi Floyd, patient
advocate, influencer, and breast cancer patient sand survivor, who recently
joined the Board of Directors. The Pink Fund is based in Detroit, but operates
in all 50 states, she said.
“In the US, health care is not just
provided just because you exist here; you have to get your own, so people have
to make decisions about what to pay that month. Can I afford radiation
treatment or do I have to keep the water on for my family? Three months’ worth
of someone paying your mortgage could be a life changer,” she explained.
Floyd, who was first diagnosed with
ER-positive, stage 3B breast cancer 18 years ago, knows the realities of the financial costs of
breast cancer from first-hand experience.
“I was a young mom. There’s a list
of things not supposed to do. I wish I had known, because it would have changed
everything for my family generationally. We did all the wrong things. We had a
college fund for the kids; we didn’t have credit cards. When We started getting
bills to the tune of hundreds of thousands of dollars after insurance, we got
every credit card we could and maxed them out, without knowing we could go to
the cancer center and negotiate, or call the mortgage company.
“Many people say, I didn’t think I
needed financial assistance. I thought I had decent insurance, but I didn’t
think about how I’d have to pay for the car to get to the cancer center, and $50
for parking, as well as child care. This month, I won’t pay the gas bill; next
month, I won’t pay the electric,” she added.
“To me, the most amazing thing if that when you’re in the middle of a serious medical issue, you immediately realize where the gaps are in the system. There are some people who it’s inherent in their nature to say, I’m just going to do what I need to survive, and then they immediately try to do what they can to help other people. Molly is not going to repair the financial toxicity in the entire system; that would be a Sisyphean challenge. But she’s going to do what she can with what she has. That’s what weaves this tapestry together,” Floyd explained.
Avoiding
the Financial Toxicity of Cancer
“When you’ve been through cancer
treatment, a long trail of side effects follow you quite a while,” said The
Pink Fund’s MacDonald, who also sits on the board of directors of the National Breast
Cancer Coalition.
“In 2013, two doctors, Yusuf Zafar and Amy Abernathy, did a study in which they coined the term financial toxicity, which is less known than the physical toxicities of cancer treatment, but it’s becoming quite a hot topic as it effects patients regardless of the time in making their decisions. The most egregious example is that, according to our work, 41% of breast cancer patients will skip or stop treatment to return to work.”
Like Floyd, MacDonald knows
first-hand about the financial toxicity of cancer treatment. Diagnosed in 2005
with ductal carcinoma in situ (stage 0), she had 23 surgeries and 6 weeks of
radiation, followed by five years of aromatase inhibitors. In 2006, she founded
The Pink Fund with her husband.
“Being diagnosed at a time of job
transition left me unemployed and unemployable while in treatment. I was
already negotiating with my health care provider to cover deductible, which it
took me 3 years to pay off. My credit report really tanked. My home did go into
foreclosure. My mother was had dementia at the time was not sure who I was, but
she knew this person Molly had cancer, and she asked how she could help. I told
her about the house, and she gave me $20,000 to pull it out of foreclosure. I
ended up in line at the food bank. Fortunately, people brought foods while I
was in treatment,” she explained.
So MacDonald started The Pink Fund,
to address the issue of financial toxicity by paying non-medical bills in women
and men in active treatment who have experienced a loss of household income. “You
have to be at or below 50% of the federal poverty level, and we pay patient’s
creditors, we don’t pay the patient,” noted MacDonald. “We pay between $3,000
to $6,000 per qualified, fully supported application, which amounts to about
57% of our income for housing every year,” she said.
The Pink Fund also covers health
insurance premiums, COBRA, car payments and insurance and transportation, as
well as utilities for 3 months. “If think of life like a Jenga tower, when your
life starts to sway, and eventually it’s going to collapse, we’re not going to
fix it, but we’re coming around providing financial scaffolding around you to
stabilize you, so you can take a breath and figure out what your long-time financial
strategy is,” MacDonald said.
Supporting Moms and Children
Like
MacDonald, Audrey Guth was a successful businesswoman when she was diagnosed
with breast cancer. “When I was diagnosed 15 years ago, I was the owner of a
nanny agency. My first cancer was thyroid. I thought I would get over it without
sharing my information with very many people. A few years later I was diagnosed
with estrogen receptor-positive breast cancer. I didn’t know anyone who had breast
cancer, but it was a totally different ball game, because it was life
threatening. After the first surgery, I was told there was nothing left to do,
but the margins weren’t clear, so it took 2 more surgeries to be able to remove
all the physical cancer. Then I went through radiation,” said Guth, who today
is the Founder and Volunteer Executive Director of Nankind, a charitable
organization that transforms the cancer experience for families with free
childcare and vital support programs, based in in Toronto.
Like
Floyd and MacDonald, Guth’s experience with cancer taught her about financial
toxicity. “When I was diagnosed, I recognized that there is a gap in the health
care system, where mothers had to make a choice between their own career and
the care of their children. No mother is going to tell you they’d choose
themselves over their children, so a lot of these moms were going without
treatment,” said Guth, who has turned over her nanny for-profit agency to her
daughter.
Today, Guth provides not only her
network of highly screened and trained Volunteer Angels to parents with cancer
and their children, but grief counselling as well. “Moms no longer here, so
what do we do, abandon these children? So I went to hire a specialist in grief
and bereavement, called a thanatologist, and asked her to create a treatment.
During that time I learned grief is not just death, but a loss of normalcy. If
children don’t grieve in an age-appropriate way, it can have long-term
psycho-social impacts. For example, 80% of people in prisons have unresolved
grief issues, as do drug abusers, those who engage in self-harming or have
eating disorders,” explained Guth. “They also have a 50% higher incidence of
mental health disorders. So we built the Nankind Program for Children. Every
week for four hours, our Volunteer Angels engage with children and teach them
coping strategies and mechanisms,” she said.
“One of the things we do that no
one else offers is intense bereavement support, such as what to say to kids at
a funeral. When you say, ‘They’re in a better place,’ that’s like saying to the
kid they’d rather be there than with you,” Guth said.
Nankind provides support to over
150 families each year, to mothers, fathers,
and primary caregivers with all types of cancer, not just breast cancer Guth
noted. “As of today, we have provided over 40,000 prepared meals to 2,000
families and empowered 3,500 children with the tools to build lifelong
emotional resilience,” she added.
Providing
Translation and Navigation Services to the Uninsured
Dora
Arias narrowly avoided the effects of financial toxicity when she was diagnosed
with stage 0 estrogen receptor-positive breast cancer in 2003. “I always had
very lumpy breasts, and always went to my annual gynecological appointments.
The doctor said, ‘Why don’t you start screening earlier, because it’s going to
be very hard for you to determine what’s good and bad.’ At age 37, my mammogram
was clear, and the following year I almost cancelled my appointment. Because I
was under 40, my insurance would not cover it, and I was not sick. My husband
was like, ‘No, don’t be crazy. If we have to pay out of pocket, we’ll pay out
of pocket,’” explained Arias, founder and executive director of Curémonos
(which means ‘healing together’ in Spanish’ in Mountainside, New Jersey.
“It
came back, and the doctor recommended a mastectomy because I had calcifications
spread throughout my breast. There was a 99% chance of a cure and no radiation,
whereas even if I had a lumpectomy, my breast was going to be disfigured. I was
scared, because I was very young, I was active, and I was working in the city
for JP Morgan. I learned that it’s not vanity, it’s the fact that you’re having
an amputation, and losing part of your body. He recommended plastic surgery
right away,” she added.
In
2009, Arias founded Curémonos, which has provided translation services as well
as patient navigation, education, and support, connecting more than 5,000 women
(most of whom are uninsured) to resources within and outside the hospital.
Today Arias provides the service on a purely voluntary basis.
“All of
these people have been through a horrible situation. Instead of dwelling on
that, saying, ‘Why me?’, they contemplate why anyone else should have to go
through it,” said Heidi Floyd. “The world is awash with people who want to
influence without actually making an impact. These women are the opposite of
that. The world has enough people telling you what kind of makeup to buy, how
to put it on, and what clothes you should wear. These women aren’t seeking
adulation or attention, but they should have all of it,” she added.
© 2023 John Otrompke
