Multiple Myeloma: Michael Riotto's Story (video)

Summary: Michael Riotto is a fierce advocate for patients' rights on Capitol Hill in Washington, D.C., and in his home state of Pennsylvania.

Transplant: 2011

An Unexpected Diagnosis: “Your bones are moth-eaten.”

(00:23) Michael Riotto: It started back in July of 2011 when my son, who was 13 at the time, asked me to take him and his friends to the Jersey Shore. Of course, I'm a 51-year-old dad trying to keep up with 13-year-old boys, and I was body surfing in the waves when I happened to get tumbled in a wave, and I hit my neck on the beach pretty hard.

(00:42) The next day, I went for an X-ray and learned that I had fractured my neck. I had fractured my C4 and my C5. They fitted me with a collar, did some CT scans, and did some blood work.

(00:52) Then, at 1:30 in the morning, the attending physician came in and said, "Your bones are moth-eaten." And I said, "What does that mean?" I found out that 88% of my bone marrow was filled with plasma cells, and I was diagnosed with multiple myeloma, an incurable blood cancer.

Myeloma and Me: An Autologous Fight: “Me, it took four days and two different medications because my stem cells were just stubborn, I guess.”

(01:11) I didn't know anything about myeloma at that point until a kind nurse gave my wife and me some booklets and some pamphlets. We were both reading the same line at the same time that said 'life expectancy five is years or less'. We were scared out of our wits. We were totally lost.

(01:29) I was diagnosed when my myeloma was at stage three. We started induction therapy, and I was on a triplet, so three different drugs a few times a week. We did that for about seven rounds, give or take. I blew up like a Pillsbury Doughboy because of all the steroids.

(01:49) So they prepped me all through this time to get ready for a stem cell transplant. I was using my own cells, an autologous transplant. We did apheresis the first week to collect my stem cells. I was one of those challenging people. It took me four days. Most people can give up 10 to 12 million cells in a day or two. It took me four days and two different medications because my stem cells were just stubborn, I guess.

Surviving Septic Shock: A Fight for His Life: “Maybe it’s time to call the family. Maybe it’s time to say goodbye.”

(02:16) My doctor said, "I want to do your transplant before Christmas". I said "No." We had no idea whether I would live for three months, three years, or five years at that point. So I said, "Can we just wait until after Christmas?" And he said, "Yes, we can. But you're going to be in the hospital after Christmas."

(02:35) Trust me, he held his word. The day after Christmas, December 26th. I was admitted to the hospital on the 27th. I was given high-dose of chemotherapy to eliminate every bit of  cancer that was in my body. And then on December 29th, I was given back my stem cells.

(02:50) Everything was fine in the hospital for the first few days after transplant. Then, about January 4th, I went into septic shock. They told my wife, "Maybe you should call the family. Maybe it's time to say goodbye," but I'm here today. So I managed to pull through that.

(03:05) I've been on a drug holiday now since the end of 2019, so it's literally been five years, and I'm very blessed, very grateful.

Legislative Advocacy: The Fight for Oral Parity: “That’s a choice between…a mortgage and food and an electric bill versus…keeping yourself alive.”

(03:16) I got involved with legislative advocacy, patient advocacy, which is absolutely my passion now. The Leukemia and Lymphoma Society heard about my issues with a particular drug that I was on. The cost of that drug at that time was $18,000 and some odd change a month. My share was anywhere between $100 and $1,100, and that's not sustainable.

(03:37) So they were working in the state of Pennsylvania, where I live, to pass what they call an oral parity bill. The insurance companies, many years ago, never thought that cancer could be treated with a pill. So, all your intravenous drugs are covered under the medical benefit of your insurance, but a pill is covered under your pharmaceutical benefit or your prescription benefit, instead.

(04:02) The insurance companies haven't caught up with modern times. There are a fair number of oral chemotherapies now. So, what an oral parity bill would do is treat oral chemo the same as it would an intravenous chemo.

(04:15) I talked with some other patients, and they were paying  $2,400 a month to have their medicine. How do you do that? That's a choice between paying a mortgage, buying food, and paying an electric bill versus keeping yourself alive. So that's where legislative advocacy comes in.

(04:33) That Pennsylvania bill took about four years to get across the finish line. There are now 43 states that have an oral parity bill. However, there's a huge chunk of people out there, about 80% of people who are insured commercially, that aren't covered under a state law because they're covered under a federal plan. So the last few years I've worked with different organizations, including the International Myeloma Foundation, the Leukemia and Lymphoma Society, the Pan Foundation, among others, to get a federal oral parity bill.

(05:06) If an oral parity bill passed, the chemo pill that you're taking would be treated under your insurance medical benefit, not your pharmaceutical benefit. So you wouldn't have unlimited cost because it would be capped. Most people have a cap on their medical benefit, whether it's $2,000 , $6,000, or whatever, and their share of that would be much less.

Legislative Advocacy: Ending Step Therapy: “Cancer patients don’t have much time.”

(05:33) So let's talk about step therapy. It's one of the things that's near and dear to my heart because I think it's a complete waste of money, time, and effort, and it delays treatment, which is really scary. It's so important that the step therapy bill gets passed.

(05:46) I think about the time when I fall out of remission, and God forbid that ever happens. But since my diagnosis, there have been thirteen new drugs for multiple myeloma. I'm not sure what will happen with my insurance company when I do fall out of remission. I don't know whether I'm going to be able to get the latest and greatest drug because my doctor may say, "Hey, you should be on this one", or if my insurance is going to make me go back and take what worked the first time. And that's the scary part. It happens all the time.

(06:18) What happens is you have to take an old, inexpensive drug before you can get the latest and greatest, even though your doctor knows full well that the latest and greatest drug is going to be better for the patient. So, step therapy would eliminate all that or at least would shorten the timeframe for when an insurer can deny a claim.

(06:38) Cancer patients don't have much time. Time is critical to them, having to worry about being on a therapy that your doctor knows isn't going to work, yet you have to take it so you can get to the next one is ridiculous. It's a waste of time, effort, and money.

Speaking for Those Who Can’t: “I stand up for all those people out there who can’t share their voice.”

(06:57) People often ask me, “Michael, why do you do everything you do? Why do you spend your time going to Washington, DC? Why do you spend time writing letters?” I do it because there are so many people out there that can't or won't, or they're just unable to. There are a lot of patients who can't get out of bed in the morning. They can't travel to Washington, DC to share their voice. So I share my voice for them. I stand up for all those people out there who can't share their voice.

(07:24) So it's important for people to share their voice, to talk to their congressman or their senator, or find an avenue where they can advocate. Advocating is simple. It could be anything from filling out a form letter and sending it on to making a phone call or actually visiting Capitol Hill. I mean, there are all kinds of ways that you can get involved. And believe it or not, senators and congressmen do tally up every single one of those emails that they get on a particular subject, so they know exactly what's going on.

A Lifeline in Friendship: “That friendship is an umbrella to keep the clouds away.”

(07:54) Having someone in the myeloma world or your cancer world, or in your disease state, whom you can share things with makes all the difference in the world. It really, really does. I can tell you that going to a support group that supports you or finding someone in the same disease state that you can share things with, can be a huge mental help.

(08:18) Several years ago, I was at an International Myeloma Foundation Conference in Charlotte, North Carolina, and I was doing some peer-to-peer education. I was giving a speech, and a gentleman approached me, and said, "I'd like to ask you some more questions." We began talking. It was a two-day conference, and the next day he came up again. He said "I would love to learn more and connect more with you." At that point, we exchanged phone numbers and emails.  

(08:45) The next few days, he called me. He had some more questions. He was recently diagnosed at that point, so he had a fair number of questions. At that point, I was involved in peer-to-peer education, and I knew we were looking for others to help. So, I called the people I worked with and said, "Hey, I met this great guy named Tony at this conference. We should bring him into the fold." and he also joined the group.

(09:14) We would attend conferences together, and that's how our friendship started. But over the years, now, 5, 6, 7 years later, we've become the best of friends. Having Tony as a best friend, who is a myeloma patient, is incredible for the support it provides for both of us. When we each have our test results or scans, we discuss them and the angst that's out there, the cloud over your head. And every once in a while, that friendship is an umbrella to keep the clouds away. So having that support is pretty remarkable.

(09:48) Find your people. They're out there. Through all the years of being in the myeloma world or the blood cancer world, I do know many people out there who have found another person or they have found a support group that they truly, truly like.

(10:04) I wouldn't trade the friendships and the people that I've met along the way for anything. I know that's kind of weird, but absolutely not. I have met incredible people. Lots of doors have closed, and I can't do a whole lot of things I want to do, but a lot of doors have opened. And I think the biggest door that opened was meeting incredible people along the way.

(10:25) My email signature says, live and love like there's no tomorrow. I certainly live every single day as if it's my last. I try to enjoy every moment. I don't sweat any of the small stuff. I think about having a wonderful wife, two great kids, an incredible best friend, and I think about all the things that the Lord's blessed me with.