Health Policy: A Look Ahead

Marianne Myers, LCA Director of Health Policy

Marianne Myers, LCA Director of Health Policy

I have only been working at Lung Cancer Alliance for three weeks and in that short period of time I have connected with more amazing people, heard more inspirational stories and been more motivated for a cause than ever before. This cause is personal to me. Every day I come to the office I am not only fighting for each person in our community, but also for my father who was diagnosed with lung cancer in 2012.

My role at LCA is Director of Health Policy. I have spent more than 18 years on and off Capitol Hill raising awareness, securing funds and advocating on behalf of several public health and education entities. I am jumping right in with our 7th National Lung Cancer Summit coming up on April 12th where we will have 100 lung cancer advocates to Washington DC to share their stories and impact direct change up on the Hill by speaking with their local representatives about the needs of our community.

Leading up to the Summit, I want to share with you some of the items we will be fighting for on the Hill that day, looking ahead this year and how you can help bring a voice to this important cause. Below are our two main focuses this year.

 

LUNG CANCER SCREENING AND EARLY DETECTION

Where It Stands: Under the Affordable Care Act, lung cancer screening is considered an essential benefit which requires private insurers to now cover the service for those at “high risk.” Additionally, earlier this year Medicare decided to also cover this life saving benefit.

Taking Action: At the Summit, as well as throughout the year, we will build upon the most recent designations by focusing on public education and implementation of lung cancer screening. We are working with Congressional Members and staff to ensure that HHS (US Department of Health and Human Services) and CMS (Centers for Medicare and Medicaid Services) are conducting proper outreach and working with states and physicians to reach everyone who falls within the at risk population and educate them on the importance of lung cancer screening.

 

21ST CENTURY CURES INITIATIVE

What Is It? The 21st Century Cures bill is legislation that seeks to address the way in which new drugs, therapies and medical devices are approved across all diseases.  Sometimes it can take up to 15 years for a new drug or device to be approved, which is unacceptable. The bill promotes new and advanced technology, reduces “red tape” in an effort to get new drugs, and technologies to market sooner which, in turn increases the quality and timeliness of patient care.

Taking Action: As Congress works through this comprehensive legislation, we are ensuring lung cancer is a key focus, including provisions that focus on improving patient survivorship, supporting new pipelines for research funding and increasing transparency and accountability.

 

Look out for ongoing updates on our Health Policy work throughout the year!

The Meaning of Green

I’ve never had to find an excuse to celebrate St. Patrick’s Day. I come from a large Irish family where there is predominance of red hair, pale skin and Guinness lovers. And I suppose it doesn’t hurt that I was born on the day adored by Irish and non-Irish alike. I am a St. Patrick’s Day baby, arguably the best day to celebrate a birthday. Yes- I am Irish through and through, and wearing green isn’t a bandwagon I jump on once a year- it’s a birthright.

Meg and Dan

Meg and Dan

Eight years ago, the color green became significant to me in an unexpected way. In May 2007, I met the man who would eventually become my fiancé after just 10 months of dating. Dan Waeger is impossible to describe in just a few short paragraphs. He lived life with the wisdom of an old man and the wide-eyed wonder of a child. His energy and smile were infectious. He was the type of person that you could spend a few hours with, and leave happier and more inspired. When we first met, he casually mentioned that he was a cancer survivor. It was hard to believe- he was 24, and we were standing in a bar after playing football in a social sports league. He certainly didn’t look or act like he was living with cancer. As we started dating, I learned that not only did he have cancer, he had stage IV lung cancer and had been in treatment since he was 22. Dan didn’t look sick, and was the most “happy go lucky” person I’d ever known.

As the weeks went by, I would accompany Dan to treatments and hang out during recovery. It was easy to see he was a passionate cancer advocate and survivor who strived to make a difference for others living with cancer, both through his job as development director for the National Coalition of Cancer Survivorship and through the National Collegiate Cancer Foundation, the organization he founded to help young adults with cancer pursue education. In addition, he found time to advocate for the Lung Cancer Alliance and spend hours on the phone mentoring others living with lung cancer.

We made weekend road trips to Livestrong events and public speaking engagements. When I asked Dan why he spent so much time devoted to cancer advocacy, he replied “Almost immediately after I was diagnosed, I realized that I would spend a great deal of time thinking about cancer. And I didn’t want to just sit around and think about it. I want to do something about it.” And even though cancer was second nature early on in our time together, our life never revolved around it. We had fun and laughs wherever we went, and pretty soon, we were together every day.

Meg and Dan 2

Dan and Meg at the beach.

Falling in love with Dan was the easiestthing I’ve ever done. And he certainly swept me off my feet with each romantic and silly gesture. When it came to love, Dan was over the top. When he proposed, he took me on an all-day scavenger hunt to all of the places that held significance in our relationship- the bar where we first met, the park we played Frisbee after our first date because neither one of us wanted to go home, to church to pray for a long life together. Each stop also had a small gift. And one of those gifts was a green bracelet with the words “Waeger Will Win”.

Dan’s friends had the bracelets made when he was first diagnosed. The phrase he had used to trash talk during any competitive event and especially on the golf course soon became his mantra as a survivor- Waeger Will Win. When we first met, I asked about the bracelet. After giving me the backstory, Dan asked if I wanted one. At the time, I felt it was reserved for his close friends and family, and not someone he had just met. But as the months went on, I really wanted to wear that green bracelet! And so on the day that he proposed- 3 days after St. Patrick’s Day and my birthday- I finally got the best piece of green I will ever wear. My own Waeger Will Win bracelet. I joked that I knew Dan was the one because he loved the color green, and that qualified him to marry a girl born on St. Patrick’s Day.

Tragically, we found out that Dan’s cancer spread just three months after we were engaged. And even though treatment options were slim, Dan continued to face each setback with his “Will Win” attitude. He continued to go to work, run his foundation, advocate for other survivors, hang out with friends and even try to run a 5k. And he never once felt sorry for himself. He never got angry if someone asked if he got lung cancer because he smoked. Rather, he used those comments to educate people about the stigmas associated with the disease. He continued to live life every day. We continued to plan our wedding, celebrate holidays and take a vacation.

Dan and I were never able to get married. He passed away March 16, 2009, the day before my birthday and 12 days before our wedding day. Looking back, I don’t think either of us felt we really needed the piece of paper to prove our commitment. Some people think it is a blessing that Dan didn’t pass on my birthday. But I don’t think I’ll ever look at St. Patrick’s Day the same.

He still lets me know I am loved. Each year on my birthday, Dan still sends me flowers. I long since took off my engagement ring and have moved forward in life with yet another amazing man who stands by me as I serve as a cancer advocate, caregiver mentor and run Dan’s foundation. But I still wear my green Waeger Will Win bracelet- seven years strong as of March 20th. Where the green once meant St. Patrick’s Day to me, it now means so much more.

 

Why the Opdivo Approval is a Big Deal

By Jennifer King, Director of Science and Research for Lung Cancer Alliance

If you happened to read last week’s Weekly Breather, you may have picked up on a few pieces of interesting news.  An important one, that also hit major media outlets, was that Opdivo (nivolumab) was approved by the FDA last Wednesday for the treatment of lung cancer – more on that in a minute.

Also mentioned in the Breather last week was my hiring as Director of Science and Research for Lung Cancer Alliance.  (I know that at least a few people read all the way down – I really appreciated the welcome emails that I received!) One of my roles will be talking about current research with all of you in the lung cancer community, so why not jump right in…  Here’s my perspective on why last week’s decision is a very important, step forward.

Jennifer King, Lung Cancer Alliance Director of Research and Science

Jennifer King, Lung Cancer Alliance Director of Science and Research

The Opdivo approval came months sooner than the scientific community expected and this was due to how significantly the drug improved survival.  But if you read the fine print of the news last week, you may have realized that the FDA’s approval of Opdivo was only for patients with a very specific type and stage of disease: squamous, non-small cell lung cancer that has already metastasized and is already resistant to platinum-based chemotherapy (like cisplatin, carboplatin, or oxaliplatin). This is only a small percentage of the patients living with lung cancer.

However, there is hope. The Opdivo approval is actually full of promise.  This drug (and many others that are currently in drug company pipelines, including a rival named Keytruda (pembrolizumab)) is in a brand new class of therapeutics called immunotherapies or immuno-oncology drugs.  Most cancer-fighting treatments are designed to kill cancer cells. But immunotherapies are different.  They are not designed to kill the cancer cells.  They are designed to help your own body’s normal immune system work better so that IT can kill the cancer cells.

There are multiple types of immunotherapies being developed and Opdivo and Keytruda are in a class called “checkpoint inhibitors”.  The body’s normal immune system has “checkpoints” that stop the immune cells from attacking everything.  If the immune system went after all the normal cells in the body, we would all have auto-immune diseases like lupus.

Tumors, including lung cancer, often fool the body’s immune system by producing proteins that activate this safety checkpoint.  Then the immune system doesn’t fight the cancer effectively.  In this case, the tumor produces a protein called PD-L1 that can bind a protein on the immune cell called PD-1. When the two proteins bind, it activates the checkpoint, halting the immune system.

Opdivo and Keytruda are both anti-PD-1 inhibitors: they bind PD-1, preventing it from binding PD-L1 and thereby surpassing the checkpoint. This keeps the normal immune system active and working to fight the tumor.   There are also multiple new drugs in clinical trials that bind PD-L1, which should have a similar effect.  PD-1/PDL-1 isn’t the only checkpoint.  In fact, there is an FDA-approved drug in metastatic melanoma called Yervoy (ipilimumab) that targets a different checkpoint protein called CTLA-4 and it is being tested in clinical trials in lung cancer.

One of the most interesting things about this class of drugs is the type of response that has been seen in trials.  Targeted therapies such as EGFR and ALK inhibitors tend to be very effective for patients with the right mutation; however, the response often doesn’t last very long and the tumors become resistant to the drug.  Both in lung cancer and in melanoma (where much of the pioneering immunotherapy work has been done) these immuno-oncology drugs have shown a different pattern.  It’s not a high percentage of people that have tumors that respond (15% in the Opdivo study).  However, in those patients, the effects of the drug are “durable”- meaning that they last a long time.

In the Opdivo study, approximately 60% of those patients that had a response were still responding to the drug six months later. There were similar findings in other studies of PD1/PDL1 inhibitors and for Yervoy. If your immune system fights the tumor well after a checkpoint inhibitor, it continues to do so for quite a while.

For a researcher like me, now there are tons of fascinating questions that could lead to big breakthroughs in patient care.  How do other types of lung cancer respond to immunotherapy? What if you don’t have chemotherapy first? Why do only that small percentage of patients respond to the immunotherapies? If we knew who to treat, it would save money and improve quality of life and we know that these drugs could have long-term effects in the treated patients.  How can you best combine immunotherapies with each other and with other cancer treatments?  Combinations of PD-1 and CTLA-4 inhibitors are showing promise already in melanoma trials. Researchers are looking at the combination of these drugs with targeted therapies as well.  And what about other types of immunotherapy? Could they be just as or more effective for patients with lung cancer?

It’s early days and there are so many questions to be answered. But this is a huge step forward: we have a new type of drug that works very differently approved by the FDA for the treatment of patients with lung cancer.  I anticipate the approval of many more immuno-oncology drugs for lung cancer as well as more indications for Opdivo over the next few years.  So I’m looking forward to writing more of these blogs with many more advances and success stories to share with all of you.

“Home”

by John Armstrong

When was the last time you went “home”? Not to visit a sick friend or relative. Or for a funeral. Just to visit with the people who shared and shaped your life.

My wife, Diane, values these trips more than anything.

A former member of the Navy and volunteer firefighter, her life has been filled with family and friends that have always been there for whatever has come down the road. This has meant so much, especially since Diane was diagnosed with stage 4 lung cancer on December 22, 2014. Yes, the dreaded C word.

Her response is probably not what you would expect. Diane is not weighed down by this news at all. Quite the contrary. Her diagnosis has made us both more appreciative of the important things in life – family and friends – and celebrating all life has to offer to the fullest.

That is why Diane decided she wanted to host a celebration of life and friendship as a way to connect all her friends and family who have meant so much over the years.  Essentially, bringing “home” to her.

The celebration will be held at the Harmony Fire Company at 440 Brainards Road , Phillipsburg ,NJ 08865 on Sunday, March 29 from 12:00 noon to 6:00 pm. We will be having an old fashioned pot luck dinner (with beer) and a silent auction. We are very fortunate to have businesses from New Jersey and Pennsylvania donating everything from gift cards to 3,000 square feet of sod to the fundraiser!

All proceeds will be going to Lung Cancer Alliance (LCA). We chose LCA after researching non profits on line and speaking with patients and their loved ones.

We are happy to say that in addition to the many folks who still live in New Jersey and Pennsylvania, Diane has old Navy friends coming from Minnesota as well as classmates driving up from North Carolina, and relatives from Indiana and Georgia.

It’s been a tough road, but we’re excited to see everyone.  Food, family and friends. All for a good cause.  Not a bad way to think of “home.”

To Help By Healing

By Michelle McMahon

I’m beginning my 6th year of tracking time closer than I had in my 49 previous years.  My sojourn began in May 2009 with a small, nagging, non- productive cough.  After a few weeks my husband encouraged me to go to the doctor and have it checked out. Initially it presented as pneumonia but after a course of antibiotic therapy with no noted improvement, further testing revealed it to be lung cancer.

I lost my mother to this disease when I was a teenager. She too, a non- smoker, passed away at 52 years of age making my situation both surreal and daunting. I chose a pulmonologist and a surgeon who collaborated with my primary physician, oncologist, my family and me. We worked through 2 surgeries, recoveries, follow ups and a two year long clinical trial for a new application of an oral chemotherapeutic medication.  I committed myself to beating this disease.

McMahon Family

Michelle and her family.

To help my healing and to help me make sense of this hand I was dealt, with family and friends by my side I started a foundation to raise awareness and funds for lung cancer education, research and treatment. Over the past 5 years we have hosted an annual event which has generated $45,000.00 toward that end. We work hard to improve other’s chances at beating this terrible disease and to bring the white ribbon into focus.  Partnering with the Lung Cancer Alliance gives a larger voice to these efforts. I had no control in my having this disease but I’ve certainly acquired some in my fighting it. We’ve seen great gains in the science and treatment of lung cancer and hopefully my contribution and commitment along with the wonderful support I have will play a small role in helping to end this disease or at the very least help ease the suffering of so many. That’s my story in a nutshell. My quick advice: be your own best advocate, don’t be shy about asking questions or for help, keep a positive attitude, surround yourself with humor and remember prayer can be as powerful as any other treatment.


 

Join Michelle and other survivors to make a difference in Washington, DC at our 7th National Lung Cancer Summit! Click here for more information and to register today!

Time Yet to Love

By Leah Herzing

Dan and I will have a little impromptu wedding vow renewal ceremony this Valentine’s Day. Throughout our marriage, I expected to have a ceremony like this later in our lives—perhaps for our 20th anniversary. However his diagnosis of Stage 4 lung cancer five months ago changed everything. At this point, there are no more distant dreams of the decades ahead. We live in the moment.

Dan’s brother, Doug, and my sister, Rachel, will travel to Oregon from Illinois to be our best man and maid of honor. Our three year old son, Raine, will be our ring bearer, and has a bow tie for the occasion. I found a little white dress and Dan will wear an extra layer to stay warm. There is a delicious cake, carefully baked by a friend to comfort his taste buds thwarted by chemotherapy. He is in the middle of his fifth infusion and is overwhelmed with fatigue and weakness. Should he need to sit during our ceremony, we will have chairs. If he can’t dance during our song, we will just sit and hold hands and look in each other’s eyes.

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Leah, Dan and their son, Raine.

We will recite our very same vows that we wrote to one another ten years ago. In 2004, we stood outside in an orchard in Metamora, Illinois, and quite nervously spoke in front of our 200+ wedding guests. The devotion and tenderness that Dan felt for me was so eloquently evident in his vows that many were brought to tears–including more than a few rather stoic men.

I was twenty-two when Dan met me—young and wistful. A year later at our wedding, I felt redeemed to have suffered heartbreaks, traumas, health struggles and hardships, and made it through my personal veil of darkness to an opening of comfort –a clearing in a forest that was a single, quiet confidence in my heart. I had found Dan, whom I loved, and I could commit to him all of my deepest esteem and everlasting faith. Of course I knew that life’s surprises awaited us, but what could we not conquer together? With Dan, my kindred spirit, what storm could not be weathered?

A storm of incurable disease is not something I expected. And I certainly didn’t expect it to strike him—my strong, resilient, healthy, and young husband, in a mere decade. Dan was only 37 years old when we were given his diagnosis. Please note, I choose the word “given” carefully because this is how I choose to weather this storm. Of the many gifts our marriage has received, a cancer diagnosis is surely the most unusual. However, it is valid. Dan didn’t die the moment that they discovered his tumors. We didn’t die the moment we heard his diagnosis.

There is time yet to love. And that is a gift.

 

Above and Beyond Series: Why I Do What I Do

I first met Don and Debbie Parker on a cold winter day when they came to the Lung Cancer Clinic at OSF Saint Francis Medical Center (Peoria, Illinois) where I work as a Clinical Nurse Specialist. Don was a quiet man, who was very concerned about his illness. His fiancé Debbie, who did most of the talking, mirrored Don’s kind, loving demeanor. Like so many couples I help in my job, after our first meeting most of my contact with Don and Debbie happened over the phone. I did my best to make sure all of their needs were met as they focused on supporting each other on their cancer journey.

Typically, the Lung Cancer Clinic process begins by bringing together a team of lung cancer specialists to formulate a treatment plan for a newly diagnosed lung cancer patient. Once a plan is in place, the patient is brought in to meet with the Nurse Navigator, dietician and any of the physicians that would be a part of their plan.

Don scheduled his Lung Cancer Clinic appointment at 8:00am. The meeting only lasts about an hour, so I had no problem, when he and Debbie told me they were planning to exchange their vows and say “I do” at the courthouse at 1:00pm that same day.

Debbie and Don getting married, thanks to the help of Jodi (back right).

Debbie and Don getting married, thanks to the help of Jodi (back right).

That morning, as I took Don’s vitals, I noticed his heart rate was elevated and his heart rhythm was irregular. Although he didn’t appear to have any symptoms of something wrong, this alarmed us.  After some initial testing, Radiation Oncologist, Dr. Mackenzie McGee, recommended further evaluation in the ER. Don’s issues were due to his tumor which had wrapped around major heart vessels.  Even after hearing this, Don made it clear that he was not going to miss his wedding. That was when I knew I had to come up with another plan. If they couldn’t make it to their wedding, I was going to bring their wedding to them in the Lung Cancer Clinic.

After explaining my plan to Don, Debbie and the medical staff, everyone agreed this was a great idea given the circumstances and we got to work! Debbie called their marriage witness, while I got on the phone with the Peoria County courthouse, since the marriage certificate was issued for a ceremony in a different county. The courthouse personnel were happy to help as well after learning about this unique situation. Word spread quickly throughout the entire hospital and within an hour and a half the wedding was planned and underway!

The most important thing to remember about this entire story is that here is a patient that just had the rug pulled out from underneath him hearing about the extent of his disease, staging and treatment plan and all the sadness and fear that it holds (the worst day of his life) then had to change his focus to getting married and all the joy that brings (the best day of his life) all within a matter of 1 ½ hours. I cannot imagine the roller coaster of emotions. This couple needed me in more ways than one. That is why I do what I do.

To read Don and Debbie’s perspective on their wedding day, click here!

 

Above and Beyond Series: Throughout the year we will be highlighting healthcare professionals, volunteers and survivors who go above and beyond to make someone else’s life better.

 

Living Life AC (After Cancer)

By Deborah Benton, 15 year lung cancer survivor

15 year lung cancer survivor, Deborah Benton.

15 year lung cancer survivor, Deborah Benton.

It’s a new year! For me, it is the year of my 15th birthday. It is really the year of my 59th birthday, but thanks to lung cancer, my life has been divided into two parts, BC (before cancer) and AC (after cancer). I was diagnosed with stage IB adenocarcinoma, on July 27, 2000 (my 44th birthday) and it rocked my world to its core. Within a week of diagnosis I had a lobectomy. I had no chemo or radiation and I have been cancer-free since then. The physical healing was easy, the emotional healing still continues. After surgery, I was sent off to “live my life”, only I had no idea how to do that anymore. I quickly found there were no support groups and pink ribbons for lung cancer. Not only that, but there seemed to be no compassion either, until I met the people at Lung Cancer Alliance. They were my salvation and I credit at least part of my survival to them. Each year gets easier, but the fear of recurrence really never leaves me. There is always that little voice in my head saying “Don’t get too complacent.”

When I was diagnosed I could not find a single person who had survived lung cancer long term. The good news is now I know lots of them! One of my wishes is that my story of survival can provide hope to all those who have to hear the words “You have lung cancer.” My other wish is that people realize there is no one way to survive cancer. Some of us speak with unbridled optimism and some of us never speak of our experiences at all. My method of survival involved a more pragmatic approach and I was often accused of not being grateful and of being pessimistic. Believe me neither of those accusations is even close to the truth. Survival is personal and, as with other aspects of life, we all do it differently. And you know what, even though I was not the most optimistic survivor, I am still here—healthy and happy! While it is probably far easier for most of us to listen to the optimist, it may be far kinder to give 1, 2, or dare I say even 5 minutes, to the person still grappling with recovery from a life and death diagnosis.

 

 

Test, Fix and Save a Life in January for National Radon Action Month

By Larainne Koehler

The hustle and bustle of the holidays is over and we are having some of the coldest weather in years.  Our doors and windows are closed against the cold, and that’s one of the first steps in getting a good radon test.

By now some of you are asking  – “What is radon and why do you need a test for it?”  Others are remembering that they have heard about it but haven’t taken action yet – what are you waiting for?

Larainne Koehler_EPA_Radon Blog_1.15.15

Larainne Koehler is the Radon & Indoor Air Coordinator for the U.S. Environmental Protection Agency Region 2.

Radon is a radioactive gas that comes from the decay of naturally occurring radium and uranium in the earth.  It is the second leading cause of lung cancer overall and the LEADING cause in non-smokers. The  Environmental Protection Agency (EPA) estimates that as many as 21,000 lung cancer deaths a year are caused by radon.  Radon is colorless and odorless, so the only way to know if your home has a problem is to test for it.

EPA and the U.S. Surgeon General recommend testing all homes below the third floor for radon and if the levels are high, take steps to lower them.  Now you may be thinking   – “How do I find a test?”   Ready for that one – Do-it yourself test kits are available online and at many home improvement and hardware stores.    Just follow the instructions that come with the kit and then send it back to the lab for analysis.  New York State, where my office is located, has a special test kit program for residents. To see if your State has a test kit program, you can find your State Radon Contact at http://www.epa.gov/radon/whereyoulive.html

Click here to get more information about radon and how you can help to spread the word. 

Check out this informative (and entertaining) video about radon and testing for it.

Take a step for a healthier and safer 2015 and test your home today.

Larainne Koehler is the Radon and Indoor Air Coordinator for the U.S. Environmental Protection Agency Region 2 and has been working on radon since she joined EPA in 1984.

(Please share this post. However, please don’t change the title or the content. If you do make changes, don’t attribute the edited title or content to EPA or the author.)

2015: A Look Ahead

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As we begin our 20th year serving our community, we look ahead to 2015 with excitement and the knowledge that many lives will be saved.

Our community is stronger than ever! Survivors and loved ones are sharing their stories and making their voices heard. More than 250 lung cancer events are anticipated throughout the country this year alone. Federal research funding will rise to the highest levels in history surpassing $100M.

Here are some other notable things to look out for in the coming year!

Lung cancer screening coverage is here! – Under the Affordable Care Act, lung cancer screening for those at high risk is now an Essential Health Benefit requiring private insurers to cover screening in 2015. We are also on the cusp of a final decision from Medicare that should call for coverage for those at risk. Find out if you are at risk for lung cancer today by answering these simple questions. Talk to your doctor about your risk and possibly getting screened.

This year marks our 20th Anniversary! – As we celebrate our 20th year, we want to celebrate yours as well. If you or someone you know is a 20+ year survivor we want to hear from you and share your story to inspire others! If you are interested, please email Gabby.

Cherry Blossoms and the 7th Annual Lung Cancer Summit in April! – This April, as tourists from around the world come to Washington, DC to enjoy the Cherry Blossoms, we will be hosting over 100 advocates and provide the training necessary to take our message of hope and fair research funding to Congress! Registration will open next week!

Lung Love Run/Walk – Lung Love Run/Walks are taking off nationwide. Join us to move with purpose, while raising awareness and funds for lung cancer in your community. Below are upcoming events.

  • West Palm Beach on March 7
  • Atlanta on April 11
  • Philadelphia on April 25 (website coming soon!)
  • Portland, OR (coming this spring!)

Our 20th year is going to be the best yet!