Being diagnosed with a disease is not only devastating to your health and emotions, it can also wreak havoc on your finances. But there are groups out there that will help patients out in these circumstances, and sometimes even pick up the tab. That is our featured “save more” segment of this podcast and for this one, I have 2 guests. In a moment, we’ll speak with Mike Snyder, a cancer survivor, who found paying for his cancer treatment almost as stressful as the disease itself. But first, I want to welcome Dana Dornsife, Chairman of Lazarex Cancer Foundation, a groundbreaking group that helps cancer patients find clinical trials, then pays their M,out-of-pocket costs so they can get treatment. Hi, Dana.
Dana, first tell me how the Lazarex Cancer Foundation came to be.
My Brother-in-law, Mike Miller, was diagnosed with pancreatic cancer in 2003. Mike and his wife Erin had three children, the youngest of whom was only four years old. I searched for options for Mike that would give their family some additional time together and found a clinical trial. Mike participated in the clinical trial, responded well and lived long enough to help his sons prepare for their future and for his daughter to remember him. Watching what Mike went through, I witnessed the gap that exists in cancer care for end stage patients. I founded Lazarex to fill that gap.
Can you explain more? Why does Lazarex focus on end stage patients and what is the gap you refer to?
We provide resources for cancer patients who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up. We present clinical trials as an alternative to hospice care for those who want to remain engaged in their fight against cancer. We help them identify their clinical trial options and provide assistance with costs. We believe that the size of a patient’s checkbook should not stand between them and the choices they make or the treatments they need. We remove the barriers to clinical trial participation for advanced stage patients seeking life through FDA clinical trials. For these patients Lazarex is literally their last line of defense.
Of course, legitimate clinical trials are free to participate in. So When you say that you provide assistance with the costs of clinical trial participation, what do you mean?
Lazarex will reimburse participation expenses for any phase therapeutic clinical trial. the clinical trial must be an FDA sponsored clinical trial held at a site in the United States. Income questions and guidelines are part of the application for financial assistance. Lazarex can help pay for the following expenses related to clinical trial participation:
Transportation (economy airfare, gas, rental cars, taxi fare, parking/tolls)
Lodging (housing during clinical trial participation)
Certain medical expenses not covered by insurance and necessary for clinical trial treatment. Lazarex will cover the same expenses for a companion to travel with the patient to the clinical trial
What a gift to these families! How do you choose which patients to work with?
We have a simple application for financial assistance and patients who qualify to participate will be reimbursed for approved out-of-pocket expenses on a sliding scale based upon their total household income. Our guidelines are include households up to 7 times the federal poverty guidelines so they are very inclusive. We arrived at this level of support through trial and error. 7 times the poverty guidelines allow us to maximize the dollars that go to the people who need them the most and turning away very few.
Dana, I know your main goal is to give cancer patients dignity and a chance to keep fighting if they want to. And i know they’re called “end stage patients” for a reason, but have you had success stories where the clinical trial worked a miracle and the patient survived?
Absolutely! Every day we receive emails and notes from our grateful patients. Quite frankly they are what keep us all going – this work is not for the faint of heart. We have many patients who are in various stages of remission or cancer free. Sadly we do lose patients but the loss also propels us forward – to never give up. You mentioned Mike Snyder at the top of the podcast – Mike and his family are an amazing example of the miracles that can come out of clinical trial participation – but we have to get patients to them in order for the miracles to happen.
Lazarex provides financial aid for cancer patients who want to participate in clinical trials. Are there other groups that help patients financially in other ways? Maybe even those facing other deadly diseases?
Yes, we list them on our website, Lazarex.org. Also the website cancer.net maintains a list of organizations that provide various kinds of financial support to cancer patients and their families, from paying for medications to covering co-pays. NIH has a similar web page that lists financial resources for those with genetic and rare diseases. For those facing other deadly diseases: the key message here is that there IS often financial help out there, so do a search and reach out for help. Knowledge is power and can make all the difference in an patients outcome.
And, folks I will link you to those resources from EasyMoneySHow.com/63. Meanwhile, Dana Dornsife, Chairman of Lazarex Cancer Foundation, thank you so much for being my guest on Easy Money.
And now, as we continue to explore the serious topic of saving money while saving your life, I want to hear from a patient who has benefitted from Lazarex’s work. Mike Snyder is a survivor who turned his cancer diary into a book called “No Treatment Options Left: Fighting and Surviving Inoperable Cancer. Mike, thanks so much for being here.
Mike, in 1996, you were diagnosed with a rare form of cancer in your knee and despite doctors amputating your leg, it came back, this time in your lungs. But you weren’t willing to accept the hospice care they suggested for you. So what did you do?
Unwilling to accept the prognosis, my family and I began researching clinical drug trials. We found one but it was a two-hour flight from home.
So you went for it and started traveling to the clinical trial. I assume you also struggled to go to work at this time. Describe what that did to your finances.
Keeping up with travel expenses to get to my life saving treatment nearly drove my family and me into bankruptcy. We were on the brink of having to sell our home.
Getting help participating in a clinical trial not only saved you money, it may have saved your life. Describe what the clinical trial has done for your recovery.
The tumors in my lungs are rock-stable: no movement; no growth; no anything. The PET images of the tumor in what remains of my left leg show extensive calcification; meaning the drug is shutting down the cellular activity of the tumor and it’s morphing into regular bone-type tissue. This change is VERY visible on the scan images and shows the drug is definitely working and working very well.
In 2012, a doctor told you you would die within 5 years. It’s 2018 now, so you beat those odds. What do the doctors in your clinical trial predict for you today?
He said, given my response, he strongly feels that I will survive another 10 years at a minimum, if not more.
And THAT is the power of continuing to fight and getting some financial help to do so. Mike Snyder, thank you so much for sharing your story on Easy Money! And listeners, I will link you to Lazarex and those other financial aid resources mentioned, from Easy Money show.com/63.
Cancer patient access to clinical trails: www.lazarex.org
A list of other organizations that provide various kinds of financial support to cancer patients and their families:
www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources
NIH has a similar web page that lists financial resources for those with genetic and rare diseases:
rarediseases.info.nih.gov/guides/pages/149/tips-for-finding-financial-aid
