Lung Cancer's Other Silent Killer

Friends and Family,

I volunteered to participate in a research project to find out what works and what doesn’t with clinical trials. While I normally focus on how Genevieve and I are facing our challenges through this eventful cancer journey, these clinical trial questions lit a fire under me about an area that almost never gets talked about. It’s the cost of treatment, even in a “free” clinical trial, where the drug itself is free. It’s time to make some noise, because this impacts almost every one of us.

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Through my own trial I’ve learned about how costs of care during a trial get distributed. While the trial sponsor covers the cost of expenses that are specific to the trial, insurance companies pay for any treatment that is considered Standard of Care. But what is Standard of Care? It doesn’t seem to me that it would be Standard of Care to get a CT scan every six weeks, or have an echocardiogram, which I had never had before. Regardless, my insurance company footed the bill. Not all of it, of course. I have a co-pay. In the past five years of trial participation, these co-pays have totaled over $25,000. While medical providers will work with people based on ability to pay, most end up on payment plans that will extend beyond their lifetime.

And then there is the cost of travel to the trial. My trial is in San Diego, a thousand miles from my Portland home. Fortunately, travel schedules line up so that we can fly out at 6:30 AM, and return on a 6:30 PM flight. It was a very tight squeeze to get all the testing done in one day, until I proposed that I get my CT scans in Portland, before coming to San Diego. We are fortunate that this has worked, or we would have had to add hotel expenses for the last 38 flights. As it is, air fare, ground transportation, parking, and meals have totaled over $22,000. Imagine if I had to travel further from home, like two of my friends who live nearby in Vancouver, Washington, who were both in a trial at MD Anderson in Texas. Each trip required a day to get there, one to three days at the trial center, and a day to fly home. I imagine that their total cost was many times what Genevieve and I have paid.

By the way, I advocated to have my travel expenses paid for by the trial (the clinic), my insurance company, and the trial sponsor (drug company), and none would cover any of the costs.

Combined, we have spent almost $10,000 per year to participate in a “free” clinical trial. We are extremely fortunate that we are able to afford these expenses. If not, I would no longer be alive.

To put this in perspective, there was a recent USA Today article about a survey that showed that 40% of Americans couldn’t afford to cover a $400 unexpected expense. How would a cancer survivor, who most often has had to unexpectedly stop working due to their health, pay $10,000 per year?

Ignoring the clinical trial for a moment, the cost of cancer treatment is an extraordinary financial burden, even with insurance.

Last Summer, Genevieve and I went to the LUNGevity HOPE Summit. (This is an awe-inspiring event for any survivor or caregiver, by the way. Learn more HERE.) During the Summit, I led some small-group sessions discussing the biggest non-health challenges to dealing with cancer. Finances were the number one concern, and by a wide margin. Several had declared bankruptcy, or were close to it, including a friend of mine who had never talked about it.

In short, we have another silent killer on the loose besides lung cancer – one that even people with lung cancer, who are used to dealing with stigma every day, won’t even say out loud. It’s the cost of treatment. And the cost of travel to get to treatment. And the lost wages due to the illness. I have no doubt that there are people who refuse treatment, simply because they do not want to place that financial burden on their families. This breaks my heart.

While we need to solve this problem, I couldn’t very well gnash my teeth and whine about this without being accountable in some way. My response was to search the web for every form of financial assistance for people with lung cancer. As a result, I have added a new page to my blog. Click on the tab that says “Financial Resources” to see what is available.

And now it’s your turn. Make some noise about the high cost of treatment for cancer survivors, any way you can. If we are successful, more people will live longer, and have more to live for.

Love,

Dann

The Lung Love Run/Walk is Just Around the Corner

Friends and Family,

It’s almost that time! Help fight lung cancer by joining Genevieve and me and our team, Live Lung and Prosper, at the Lung Love Run/Walk on Saturday, June 22nd in Laurelhurst Park. The event is 5K, and as the name implies, you can run or walk. (A few people have been known to stop after two of the three laps around the park, so anything goes.)

 You also have the option of donating. We are 1/3 the way toward our team goal of raising $2,000. Every dollar makes a difference for lung cancer research, advocacy, and support of our growing ranks of survivors!

 Here’s the page to join: https://lungloverunwalkportland.yournextstepisthecure.org/

 Here’s the page to donate: https://lungloverunwalkportland.yournextstepisthecure.org/Dann?tab=MyPage

 Hoping you’ll participate, one way or another!

 Love,

 Dann

Fight Lung Cancer With One Finger

Friends and Family,

There are two easy ways that you can help fight lung cancer using just one finger, and I’m going to make it even easier. Just click the links. Here they are:

1) In 2009, Congress allocated $20M per year for lung cancer research. It has never been close to that amount since. To sign the petition to restore funding, take action here. I have lobbied for this same $20M in Washington for the past three years. You can do it without all the travel. THE DEADLINE FOR SIGNATURES IS MARCH 26TH.

2) The Lung Love Run/Walk Portland is coming up on Saturday, June 22nd at Laurelhurst Park. To join my team, Live Lung and Prosper, to donate, or form your own team, click here. Funds for this event will go to cancer research and advocacy through Lung Cancer Alliance, the organization I support in these efforts.

You can do all this with one finger if you’re a hunt ‘n pecker.

Let’s kick some cancer booty!

Love,

Dann

Another Trip to San Diego, but Things are Changing

Friends and Family, 

Since Genevieve and I first started going to San Diego for my clinical trial, a lot has changed. UCSD has built three new buildings and a parking structure on the campus. The city has widened the roads on two sides of the campus, and the bones of a new elevated trolley have appeared. We have been through three different nurses assigned to work with Dr. Patel, and this is our sixth clinical trial coordinator. In fact, the only people that have remained constant have been Dr. Patel, and the woman at the Budget rental car window that we see every trip.

There is one other thing that hasn’t changed, and that is my scan results. 50 months after starting this trial, we are still overwhelmed every time we make the 1,000 mile flight and hear the words, “there is no change.” This gift of 40 “bonus” months beyond the average  (and counting!) means that there is more time for the next new treatment that could extend my life to be developed. I may just outrun this cancer yet!

There is one other change, and it’s a good one. I outlasted my clinical trial! While I will still keep going to San Diego for my care, and my daily Tagrisso pill will remain free for as long as it works for me, they are no longer collecting data. So, starting with this last trip, there are no more echocardiograms and EKGs every three months, and I no longer have to get radioactive contrast die injected in my veins every time I get a CT scan. HUGE relief on that one. Things couldn’t get much easier! We have an unbelievable amount to be grateful for.

I also wanted to tell you about my book giveaway. In honor of Lung Cancer Awareness Month, I gave away the digital version of my book to anyone who ordered one on Amazon in the last three days of November. That random number of books given away turned out to be 433. And while I was quite happy to give away that many, the significance of the number didn’t hit me until I shared it with some blogger friends. They immediately asked me if I gave away that number on purpose, since 433 is the number of people that die every day of lung cancer. You will find a lot of social media posts with #433 or #433aday. Amazing! 

One more thing to share, and that’s my next new Thriving With Cancer Minute on You Tube.  Here’s the link: https://youtu.be/3_TmzkflEBs

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Hoping all is going well with you, and you find much to be grateful for.

Love,

Dann

Politics can get Very Uncomfortable

Friends and Family,

 Sometimes, you have to take a stand. It happened for me when I learned that the Oregon Health Plan (the states’ affordable care/Medicaid program) was holding a public hearing to consider banning payment for cancer genetic testing. How could they do such a thing? To deny testing meant to deny access to any targeted therapies. Why should those with limited means be limited to the same treatment options that have been around for decades? This is not acceptable!

 I coordinated with LUNGevity and Caring Ambassadors, skipped work last Thursday, and showed up to testify. I’m so very glad I did.

 The review committee started with their own discussion, where it became clear that the chairman thought such testing was a waste of resources. He also clarified that this proposal would ban payment for most, but not all, genetic testing. Representatives from drug companies, testing companies, advocacy groups, and health care systems all testified in strong support of testing. The committee chair was not impressed.  

When all the professionals were done talking, I was the final speaker. First, I read the testimony of Jacque, a 32 year-old survivor friend who couldn’t be there. I could barely hold it together – actually, I didn’t – while I read of her six-year battle, and how she wouldn’t be alive without the genetic testing that has opened the door for her to have had two separate treatments with targeted therapies.

 Next, I shared a brief version of my own twelve-year story. I shared the highs, the lows, the fears… and a lot of my own tears. I told them that, without genetic testing and then targeted therapy, they would have been talking to my widow. I am alive today because of two separate targeted therapies, which were only available after genetic testing.

 Three of the four committee members were clearly moved, but the committee chair wouldn’t (couldn’t?) make eye contact with me. One member had flash cards to warn speakers when their time was running out, but he never lifted a card, even after I continued telling my story after my time had expired.

 When I finished, there was an awkward silence. The chair didn’t say another negative word about testing. The committee fumbled around for a bit, unwilling to vote to ban payment. Finally, they passed a resolution to table the topic until they had more data. I’m calling this a victory! It would have been next to impossible to overturn a rule once it is in place.

 When they were finished with the vote, all the people who had spoken, and a few others who hadn’t, gathered outside the committee room. Most of them came up to me, one by one, to tell me that they thought that the ban would have passed if I hadn’t shared Jacque’s and my stories. Science is one thing: putting a human face on the discussion was entirely another matter.

 I have seen the same responsiveness when lobbying in Washington, DC. Our elected representatives are far more receptive when you share your story than if you only offer statistics.

 If your passion is lung cancer, I hope you share your story with anyone who will listen. And if your passion is some other cause, share the personal side of that, too. This has been a great reminder for me that  in the end, we’re all human, and humanity is what we respond to. That is why I continue to share so much of myself with you, no matter how uncomfortable it is. It still brings us closer together.

 Hoping your life is uncomfortable… in a good way.

 Love,

 Dann

The 5K Walk that Took Us 2,400 Miles Away

Friends and Family,

A month ago, we had the fourth annual Lung Love Run/Walk in Portland. Our group did us proud on this beautiful day, and we were one of the top fund-raising teams. For all of you who donated to help lobby for lung cancer research, thank you! This year’s event raised $50,000, the most ever! Here’s this year’s amazing group, Team Live Lung and Prosper:

Biggie, Jai Dev, Rebbecca, Dann, Genevieve, Jaidy, Steve, Violet, and Cody*

Biggie, Jai Dev, Rebbecca, Dann, Genevieve, Jaidy, Steve, Violet, and Cody*

Coincidentally, the funds raised went to almost immediate use when we had the National Advocacy Summit a couple weeks ago. 120 survivors, caregivers, and health care professionals “stormed the hill” to lobby Congress. Our friends Dawn and Greg were with us, representing the State of Washington.

Dann, Genevieve, Dawn, Greg

Dann, Genevieve, Dawn, Greg

Before we got started, Rep. Rick Nolan from Minnesota, who has been a co-chair of the Lung Cancer Caucus for many years, kicked off the day of lobbying with a sobering thought. “If you don’t show up in Washington, they think one of two things. One: You don’t exist. Far worse is number two: They know you exist, but think you don’t care.”

Rep. Rick Nolan

Rep. Rick Nolan

Yowza. This is why we need to keep showing up in Washington. They have to know how critical this is.

One of my favorite parts was meeting with the congresswoman from our district, Rep. Suzanne Bonamici. This is the third time I have lobbied in DC (second time for Genevieve), and each time both she and her health care policy staff person have met with us. Each time she has been gracious and welcoming, asking if there is anything else that she can do. You can understand why she is more engaged than most: Her mother, at almost ninety years old, and is a lung cancer survivor. But there’s more. Last fall,  her stepfather was diagnosed with lung cancer, and died just months later. You can read more about her story HERE.

On our last trip, I gave her one of my books to give to her mother. This time, she thanked me for the book, and told me that her mother is reading it. This time I asked Rep. Bonamici if she would consider a leadership role in the Lung Cancer Caucus, since both co-chairs are resigning after this year. Just a couple of minutes after asking her, Laurie Ambrose-Felton, the Lung Cancer Alliance CEO and President, crashed our meeting and asked her the same thing!

Greg, Dawn, Genevieve, Dann, Rep. Bonamici

Greg, Dawn, Genevieve, Dann, Rep. Bonamici

Other than Rep. Bonamici, we met with staff with health care portfolios for our Oregon senators and congressmen/women. You may be surprised to learn that Washington is being run not just by the elder statesmen/women that we elect, but mostly by energetic twenty-somethings that do all the research for them. It’s a little scary, until you see how smart and committed they are. Some wouldn’t let us take their pictures because “I’m not the face of this office,” but all were extraordinarily receptive and compassionate. Here are the ones we could snap:

Alexa Damis-Wulff of Sen. Jeff Merkley's office with Dann and Genevieve

Alexa Damis-Wulff of Sen. Jeff Merkley's office with Dann and Genevieve

Rina Wulfing showing us the great view from Rep. Peter DeFazio's office! 

Rina Wulfing showing us the great view from Rep. Peter DeFazio's office! 

Nolan Ahern: Every day is Bring Your Dog to Work Day in Rep. Greg Walden's Office!

Nolan Ahern: Every day is Bring Your Dog to Work Day in Rep. Greg Walden's Office!

While having direct impact on our national government is heady stuff, there were also a few things I wasn’t thrilled about. First, we weren’t asking for enough! Asking for $6 million is NOTHING in the national budget! That is less than two pennies for every American, and yet 160,000 people a year die of lung cancer! Twice as many women die from lung cancer as breast cancer. Lung cancer kills more people than the next three leading cancers COMBINED. People are up in arms about the Opiate Epidemic, yet two and a half times as many people die every year from lung cancer. Why is lung cancer not considered an epidemic? Why are we asking so little, when the need is so great?

I’m also not happy that LCA doesn’t ask survivors what LCA’s agenda should be. While they claim to represent survivors, they don’t ask us what we think they should be doing. The short answer: MORE.

Finally, it’s not easy to make this trip for many people, and not just those with health challenges. LCA covered half of my flight, none of Genevieve’s, and only two of the three nights at the hotel. Most survivors have extraordinary health care expenses, and almost all have had to curtail work or stop working all together. LCA is asking people with financial hardships to foot their own bill. It’s no wonder the Western US was drastically underrepresented compared to the states within driving distance.

While I strongly believe in the process of getting involved with our national leaders, I’ll have to think a bit longer about whether I want to continue working with this group that is having far less impact than I think they should have.

The next Summit will be next March, right after a new Congress is sworn in. I’ll keep you posted about whether I'll be attending. If you have any thoughts about this, please share them with me.

Love,

Dann