Partner Spotlight: Family Reach

Published on

Topics include: Living Well

Patient Power founder Andrew Schorr is shining a light on our valued partner, Family Reach, to give an in-depth look at the cancer-related financial toxicity that deeply affects patients on a day-to-day basis; accessing care, adhering to treatment, survival and quality of life. “One out of three pediatric patients and 73 percent of adult cancer patients will experience a form of financial toxicity,” says Carla Tardif, breast cancer survivor and Family Reach CEO. Carla shares current data and statistics on patients who struggle with financial issues and provides helpful resources for financial planning and assistance. How can Family Reach support you and your loved ones? Carla also discusses the Family Reach mission and how they are working to alleviate the financial burden for those affected by cancer. Watch now to find out more. 

Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

So when you think about cancer we really need people to understand that there is a financial implication to cancer, and it will affect, likely affect, your ability to get to the other side.   

Carla Tardif:

No, we're not.

Andrew Schorr:

…which is very much in the news, or what Medicare or your insurance is going to pay at the hospital. It's more than that, right?   

So those are staggering numbers, but what does that mean to cancer patients?  It means if you have cancer and you can't pay your utility bill you, yourself or a child is immune compromised living in a cold home.  Now, here on the east coast, Boston, where we're from, that can be deadly.  We have families that their car is reposed, they can't make car payments.  So families are saying all of thyme they have to choose each month.  Do I pay my mortgage or do I pay my car payment.  Do I put gas in or do I put food on the table.  These are choices they're making every day.   

I have people who call me from the hospital saying they are getting released from the hospital but there's a repo guy in their driveway ready to repossess their car, and if that happens clearly the next day they cannot get back to the hospital for treatment. So when we talk about financial barriers I'm not just talking about an inconvenience where you can't go out to dinner or your vacations are being cut back.  These are real-life basic needs that cancer patients again are being forced to make these very difficult decisions that have really scary, deadly ramifications, like losing your car.  

So the stats—you know, some of the other stats that we were able to dig up from our white paper is that 38 percent of adult patients aren't able to actually fill their prescriptions, 31 percent are cutting their meds in half to make them last longer.  So when we dig a little deeper about how finances are having an effect we see that it has an effect on their ability to adhere to treatment, so naturally that's going to affect their survival rate.  

There's a blue ribbon cast that you talk about.  I have a medical advisory board that is made up of oncologists, economists and researchers that have embarked on these studies to help us pull back the curtain and show how finances are affecting cancer patients.  And then you know I have many groups.  I have a family counsel that is made up of families that have been helped by Family Reach that they themselves experienced real financial toxicity, so we're learning from them what that meant to them.  When did they know that they were in trouble?   

When were they even willing to look at it, to think about it, because when you have a cancer diagnosis nothing else matters for a long time until you get really behind and there's somebody knocking on your door to kick you out of your apartment or your home. So at what point are they even able to talk about it and to think about it.  

So the family counsel is really driving our steps to understand from the patient's perspective what they need to know, when they need to know it, what they learned the hard way.  And we simply ask them what would you want to tell somebody just starting down this path.  So that's helping drive our steps, the medical advisory board as well, to help us create that data that helps us tell a very compelling story to get others involved to help us.  

But I love the way you said the middle class, they're the folks, they are doing everything right. They have health insurance.  They have great jobs.  Many of them own their own homes, and they are the ones that are working with nonprofits and charities so make a difference in their community. So for the tables to be turned, for them to be the ones that need the help, the last thing they do is speak up. 

And I also think that if we can wipe out the shame and if we can get people to understand that finances will be part of your cancer journey, especially for the middle class, for them to know that there are resources and that there is help.  I think shame is an issue why people don't speak up.  I also think they speak up, because they don't think that there's anything anyone can do.  

I hear often that people say that they're afraid to talk to their doctor about because they're afraid the doctor might change the course of the treatment or look at this patient differently, and the doctors—you know, we talk to the doctors, we have a medical advisory board, and we say, are you talking to your patients about this? And they say, no, I am so focused on the cancer I'm not thinking about the patient, to be frank.   

I shadowed a pediatric oncology—a pediatric oncologist at All Children's in Tampa.  This brilliant woman, we walked into a room to help a little boy who had brain cancer.  He was 6 years old.  He had Down syndrome he had been battling for two years, and he sat there on his parent's lap, and we want in to give the news that the chemotherapy was not working. The tumor was growing, and she wanted to try something else.   

So this little boy is squirming around in his mom's lap, and this mom said, I'm sorry.  We got up at 4:00 in the morning to get here.  So I'm thinking, it was 10:00, so they live four or five hours away from the hospital, but the doctor didn't hear that.  She is so focused on how am I going to cure this little boy.  And then she said he needs another surgery.  I'm sending you up to the surgical team on the third floor, and the dad said how long is this going to take?  We have two other children that get off the school bus at 2:30.  

The doctor doesn't hear that. She's got to get this tumor.  So and then they ask, when is the surgery because they're out of vacation time, they're out of sick time, and they live far from the hospital.  And when we walked out of that hospital room I said to the doctor, with all due respect, I highly doubt that family's coming back.  And she looked at me like why?  How?  And I said I don't—I know what you saw, but here's what I saw.  And the family didn't come back.  They weren't able to.  They had to find care closer to home.  They just weren't able to access that.  

So finances, again if we know early, there are systems we can put into place.  If you're struggling with your cost of drugs, there are drug assistance programs.  There are co-pay assistance programs.  Did you know in many states they have secondary insurance programs?  Did you know that you can get on a payment plan with your hospital?  But if you don't speak up early these resources and these opportunities lay dormant.  I have pharma companies coming to me saying, why aren't any patients taking advantage of our copay assistance or our drug assistance?  The answer is they don't know about it.  

So there's so much value in speaking up.  And I just want anybody that you were saying is shaking their head, because I know the numbers and there's a lot of you that are, it's nothing you did wrong.  There is help out there.  Ask early.  

I also want to say one thing, what we've heard families say was really helpful for them, identify somebody in your close network that can do this for you.  Again, I have had cancer, and every doctor's appointment I had somebody come with me, because you can't take in all that information.  Do the same for your finances.  Pick somebody that you trust in your family or a close friend that you can confide in so that when people are saying to you what can I do? How can I help?  I want to do something, I've had families saying instead of bringing me another lasagna, could you pay my utility bill?   

But that's hard for the patient to say, but get somebody in your network that can say that.  What this family really needs right now is carpool assistance for their kids to school or funds to pay their utility bill. Get somebody that can say that for you. 

So if they want to contact Family Reach as a window to either what you can do or where you direct them, they can do that, right?  

And it will tell you who in your hospital to ask for, be it a social worker, a resource specialist, a nurse navigator, and it will give you some other resources.  So go to familyreach.org and download our financial handbook.  

I do have resource specialists on my team.  You can call us.  One thing, a new program we're implementing is pro bono certified financial planners. Again, if you ask early we can team you up with a financial planner that will sit down and look at your nonmedical expenses.  They've gone through a Family Reach training module so they understand the cancer journey, and they can help you figure out how you can plan to get through cancer.  They can also make sure you're on the right insurance, and they can help, again, just help you navigate some resources that are out there.  I have additional resource specialists and navigators on my team.  

So, you're right.  It might not be a grant, but we are a wealth of knowledge and invite you to just call us to say what do you know.  We partner with 350 hospitals across the country, so it's very possible that we know somebody in your hospital and can actually hook you up with somebody in the hospital where you are.   

I want to thank you for being with us.  I want our audience to know Patient Power is very committed to being out front in discussing this.  We've talked about treatments.  We've talked about research.  Carla spoke about the doctors being very focused on cancer, and that's primary, but we're in this as patients and family members, and there are issues that affect us and our ability to get what's right for you us.  

Carla Tardiff from Family Reach in Boston, thank you so much for being with us.  And, Carla, thanks for your dedication to this, and we wish you long life and good health.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Related Programs

Cancer Costs Are Stressing Me Out: How Do I Cope?

Cancer treatment is expensive. Who can patients talk to about financial resources? Nancy Novack, from NancysList.org, explains.

Published:

Affordability of Medication: Why Communication With Your Provider Is Essential

At our recent MPN Town Meeting at City of Hope, MPN experts discuss affordability of medication and why you should be communicating with your doctor about it.

Published:

Dear Stacey: Your Coverage Questions Answered

Even with health insurance, many cancer patients struggle with costs for diagnostics, screening and treatment. What can patients expect insurance to cover? What steps can be taken if claims for treatment are denied? Watch now to find out.

Published:

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on September 27, 2018