Category Archives: legislation

Are We Wasting Time Appealing to Congress?

I write to Congress fairly often in hopes of convincing them to throw more support toward lung cancer research. But, I wonder if my time wouldn’t be better spent writing to the National Institutes of Health (NIH) and/or the Centers for Disease Control and Prevention (CDC)?

Here’s why I ask. I received a response to one of my letters from my senator, John Cornyn, that actually included some potentially valuable information. He wrote,

As you know, entities such as the National Institutes of Health and the Centers for Disease Control and Prevention are charged with allocating federal research dollars toward research and initiatives that will advance prevention and successfully treat diseases and health conditions. I believe Congress plays an important role in overseeing the distribution of these monies and must ensure they are wisely spent.¹(emphasis mine)

Should we not then be concentrating some of our efforts to advocating the CDC and the NIH to allocate more of the research dollars they receive to lung cancer? I mean, I know we need to talk to Congress about budgeting the dollars for NIH or CDC, but once there, I am not sure their researchers feel a real need to fund lung cancer.

I base my theory, in part, on a statement made by the NIH to Cure Magazine in August 2017. I was angry and incredulous when I read:

According to the National Institutes of Health, lung cancer received about $250 million in recent years in research funding annually, and it claimed 25 percent of all cancer deaths. That means that about $1,700 is spent for every person who dies each year from lung cancer. That spending rate is much higher for other forms of cancer.

Leukemia receives about $240 million a year and accounts for about 4 percent of cancer deaths. That means almost $10,000 is spent for every person who dies of leukemia. For breast cancer, that number is about $13,000.

The NIH states that funding is provided to research based on its scientific merits, not the type of cancer it targets. (emphasis mine)²

Lung cancer kills more people than the next three biggest cancer killers combined: prostate, breast, and colon. The NIH surely sees breast cancer as a worthy cause to fund. Are the researchers seeking funds that target breast cancer that much better grant writers or trial designers than those seeking money for lung cancer research? I sincerely doubt it.


If you wish to make your voice heard by the NIH, contact information for the Director  is:

Francis S. Collins, MD, PhD
BG 1 RM 118A
1 Center Dr
Bethesda, MD 20814
francis.collins@nih.gov
301-496-2433

You can contact the CDC at:

Anne Schuchat, MD, Acting Director
Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30329-4027

The National Cancer Institute’s contact information is:

  1. 1-800-4-CANCER (telephone answered weekdays from 9 AM until 9 PM ET)
  2. LiveHelp Online Chat, LiveHelp (M-F, 9AM – 9PM ET)
  3. Email

Mr. Cornyn further advised me that he does not sit on the Senate Appropriations Committee so has little jurisdiction over how the annual appropriations bill will be allocated.

So, I guess my next question is to you. Does your senator sit on the Appropriations Committee? Please click on the link and send your Senator a letter if he or she is on the committee.

 

 


¹Letter from John Cornyn to Donna Fernandez (donna@hopeandsurvive.com), dated 02/09/2018

²T Keenan. “The American Lung Association Seeks to End Stigma.”  Cure Magazine. August 11, 2017. https://www.curetoday.com/articles/the-american-lung-association-seeks-to-end-stigma. Accessed 3/4/2018

 

If I Don’t Do It, Who Will?

Just this morning, I heard about a 29-year old man who has been diagnosed with lung cancer who wants to raise awareness about the disease by having his state offer specialized “beat lung cancer” license tags. Stephen Huff is among a growing number of young adults who are being diagnosed with late-stage lung cancer. They never smoked. They were active. They were healthy. They’re young. And, yet, they are fighting the most deadly cancer there is.

It used to be that when you thought of lung cancer, your mind’s eye saw a wrinkled old man with a half-burned, long-ash cigarette hanging out of his mouth or an elderly woman holding a burning cigarette in her tobacco-stained fingers. You hear hacking and coughing and have a generally negative attitude about the whole person/disease/addiction.

The picture of what lung cancer looks and sounds like needs to change and it needs to change NOW. In today’s world, your mind would be just as accurate if it saw a virile, 20-something with a racing bib on. Or, a 40-year-old mom cheering on her son’s soccer team. Or, your next door neighbor who never smoked and was never around cigarette smoke. Or you.

Smoking is still the number one cause of lung cancer, but every year, more and more nonsmokers are being diagnosed with lung cancer. Especially for nonsmokers, the disease is usually not diagnosed until it is stage III or IV since no one, not the patient, not the doctor, suspects lung cancer as the cause of symptoms until every other possible option has been exhausted at least once.

And, as an aside, even IF the person diagnosed with cancer is or was addicted to tobacco, do they really deserve to die? In today’s world of acceptance (gays, transgenders, races, nationalities, religions, the list goes on and on), we do not, DO NOT, accept smokers. Whether conscious or not, we as a society are perfectly willing for those evil smokers to fight and die from lung cancer because somehow they deserve what they got. Individuals, companies, and government agencies all withhold their money from lung cancer research because, however wrong, they believe it is a cause that does not deserve support.

Stepping back off of that soapbox, I’ll climb onto another …

Mr. Huff, the young man recently diagnosed with stage IV nonsmall cell lung cancer, is asking his state legislators to offer lung cancer awareness license plates. The plates will cost taxpayers an additional $55. Half of those funds would be sent to his chosen charity to help pay for more research. At this point, he doesn’t think raising money will help save his own life, but he is adamant that more funding for research will save lives in the future.

I agree that it is crucial to get more funding in the hands of researchers. When I look at the tremendous progress that has been made already, despite every possible financial obstacle being thrown in the way, my mind can’t comprehend what scientists could accomplish with adequate funding. According to LUNGevity, only six percent of federal dollars devoted to cancer research goes to lung cancer research. How does this add up? The most deadly cancer gets the least amount of funding? Boy! Some stigmas die hard, do they not?

Let’s put the disparity in funding into hard, cold facts:

During his interview, Mr. Huff was asked why he was trying to get the state to issue license tags supporting lung cancer research. His response is one I hope we all will consider,

“If I don’t do it, who will?”

 

 

21st Century Cures Act

So … I am departing from my usual type post and am going to talk about the 21st Century Cures Act (H.R. 6) here. I had never heard of it until a month ago. A much bigger thing should have been made about it. Not only because it will impact all of us, but because both Republicans and Democrats came together to pass the bill in an act of overwhelming bipartisanship. If only we could see a lot more working together. Think what we could do for this country.

I wonder how many of you have ever heard of H.R. 6? It was passed on July 10th of this year. I didn’t hear about it until I was speaking to Senator Pete Sessions in late September. I meant to research it then, but kept forgetting. I heard its name again this week. Because I am once again putting aside my public speaking fears and speaking in Fort Worth next week, I decided it was time to learn a little something about this act.

Purpose

The purpose of the 21st Century Cures Act is “expediting research and development on debilitating diseases, and making it easier to get important treatments to the patients who need them.”  (http://www.theatlantic.com/politics/archive/2015/07/21st-century-cures-act-bipartisan/398369/)

Major highlights of the Act include:

  • increasing research collaborations (imagine! working together to find cures!!)
  • promoting personalized drug treatments (think biomarkers, targeted therapies)
  • streamlining clinical trials by making it easier for pharmaceutical companies to bring drugs to market (will this help reduce the exorbitant cost of drugs? Or, as critics warn, weaken the safety standards?)
  • creating incentives for the development of treatments for uncommon but deadly diseases (this surely gets two thumbs up)
  • encouraging young scientists to stay in the research field (huge!)
  • providing more funding to National Institutes of Health (NIH) ($1.75 billion per year for the next five years) and the Food and Drug Administration (FDA) ($110 million per year)

 

Facts

Here are some facts, according to an article in The Atlantic and a FAQ from the Energy and Commerce Committee:

  • Passed through House Energy and Commerce committee with a 51-0 vote (nearly unheard of in today’s climate, especially for a bill that is termed “substantive and substantial”)
  • Funding will come, in part, from a modest reduction of the Strategic Petroleum Reserve (SPR)
  • Bringing new drugs to the market can cost hundreds of millions of dollars (or more), meaning promising ideas are abandoned or tabled.
  • For every 5,000 to 10,000 promising treatments, only one or two end up in the marketplace
  • Finding a cure or effective treatments for the more than 5 million US citizens who suffer from Alzheimer’s could cost the federal government $15 trillion over the next 40 years; currently the disease accounts for nearly $140 billion per year in Medicare and Medicaid payments.
  • The FDA would be required to listen to patient voices/experiences when approving experimental drugs and devices
  • Patient-generated registries would be used to recruit participants in clinical trials
  • Genetic testing would determine a patient’s predisposition to respond to targeted therapies

Take the time to learn more. Then, email any comments you have about this initiative to cures@mail.house.gov (note: submissions to this email address will be made publicly available on energycommerce.house.gov/cures)