Funding NET cancer research

While the news on the NET cancer research front was very good at last week’s Dana-Farber Cancer Institute Gastrointestinal Visiting Committee meeting, the financial outlook was far less upbeat. We spent a good chunk of our working lunch talking about funding issues given the rapidly approaching fiscal cliff and what may turn into a weakening global economy.

I heard for years how money did not matter.

The more we talked, the more I felt like we were potentially looking at 1968 all over again. That year, faced with a budget crunch, the federal government decided

to eliminate all funding for what it saw as minor cancers. On that list was NET cancer. The next time that disease saw any federal money was 2008. Today there are two federal grants helping fund NET cancer research. They are not large, but they are there. That funding sends a message to other funders, however, as well. If it is important enough for the National Cancer Institute to fund, their reasoning goes, it may be important enough for us.

I would not bet on a cut of less than 10 percent…At current funding levels, only seven percent of all grant requests end up being funded at the federal level. Under the sequester the House and Senate agreed to in August 2011 as part of the budget ceiling deal, spending on cancer research faces a potential 10 percent cut in next year’s budget. Depending on the election and what kind of deal a lame-duck session of congress works out in the waning days of the year–if it works out anything at all–cancer funding could do better, worse, or stay where it appears to be under the sequester.

But when other cancers get a cold, NET cancer gets pneumonia. Our resources are so slender that any kind of loss of resources can set us back years.

I would not bet on a cut of less than 10 percent–and I don’t think many people in the room Friday would bet on it either. That 10 percent cut would more than wipe out all of the gains made in federal research funding at DFCI since 2003. To say there has been little growth in federal spending over the last ten years would be damning with faint praise. The increases have not even come close to keeping pace with inflation. And I would be very surprised if NET cancer research funding from the government would survive a 10 percent cut.

Inside the DFCI numbers

DFCI’s operating expenses have more than doubled over the last 10 years–as has the number of patients treated in a year. A just-completed capital campaign–and a substantial increase in philanthropy income as a result–has helped the Institute continue to expand its research footprint. But the ongoing weakness in the economy has people worried about whether those numbers can be sustained. Private support for DFCI was virtually flat this year–and giving by individuals was down about one-sixth: down over $9 million. Fortunately, corporate giving was up almost the same amount, but if the economy were to weaken substantially it is not clear that could be maintained. As both I and others have written, we do not lack for ideas when it comes to cancer research; what we lack are the financial resources to investigate every avenue that needs to be investigated.

That funding sends a message to other funders…

And nowhere is that more true than in the gastrointestinal cancers in general–and NET cancer in particular. All these cancers are difficult to detect–and traditional approaches to research and treatment don’t seem to work very well. The best answer we have is early detection and surgery in most cases. Later detection leaves us relegated to trying to slow the disease down and managing end of life care. As I wrote yesterday, there are lots of interesting ideas on the table growing out of a better understanding of the way the genomes of these cancers work–and not just for NET cancer.

As an educator, I heard for years how money did not matter. It was not true in education–and it is certainly not true for cancer research in general–or NET cancer in particular.

Lots of good NET cancer news

There was good news on many fronts—including NET cancer—at the Dana-Farber Cancer Institute’s Gastrointestinal Cancer Visiting Committee sessions Friday. But concerns about budget issues hung heavy in the air as well.

…there is a lot of promising research going on…

Dr. Matt Kulke presented on the Institute’s newly established Program in Neuroendocrine and Carcinoid Tumors and cited a considerable array of progress at both the basic research and drug trial levels. After years of collecting blood samples, work as begun on sequencing the genomes of those with the disease against those who do not. The hope is that work will lead to new ideas on how to attack NET cancer.

NET cancer genome

Collecting and storing the samples cost Dana-Farber about $1 million. Beginning the analysis of those samples has cost $500,000 so far. None of the money for either of those processes came from the federal government or from drug companies. The entire bill has been footed by DFCI donors–who will continue to take responsibility for funding the project.

…the question of viruses as a potential treatment vector was discussed briefly…

But DFCI is in a unique position to carry out this research. The Institute is home to the Center for Cancer Genome Discovery and has made an ongoing effort to champion genetic research into cancer. Since that Center was established about ten years ago the cost of running a genome test—as well as the speed with which it can be done—has plummeted. And DFCI has worked hard to keep the center on the cutting edge of the technology.

NET cancer drug trials at DFCI

Most of the drugs we have in the arsenal—including the drugs currently in trials—are aimed at slowing or stopping the growth of NET cancer. Other than surgery—which really only works well on the disease when it is caught very early—we have nothing in trials that offers a possible cure for those with more advanced forms of the disease.

But there is a great deal in the pipeline at DFCI that may extend high quality life for NET cancer patients. There are seven separate trials ongoing there at the moment ranging from early Stage I to late Stage III.

…a new type of endoscopy using infrared rather than white light…

None of these drugs were originally developed with NET cancer in mind. Rather, researchers have been looking at drugs that are already on the market that attack a pathway we know is involved with the growth and function of NET cancer.

That method led to FDA approval of Sunitinib and Everolimus in May of 2011. Telotristat Etiprate, which is currently in human trials, may soon join those two drugs. After a nearly 30-year drought during which no new drugs were approved for the disease in the US, that represents major progress.

Discovering NET cancer remains tough

But there is not much on the horizon that will improve our ability to detect NET cancer in its early stages. That makes finding new approaches to curing the disease even more important.

…there is a great deal in the pipeline at DFCI…

There was one potential bright spot in this area, however. One of the other presentations talked about a new type of endoscopy using infrared rather than white light. It seemed to me this technology might make the detection of NET cancer tumors more likely during colonoscopies, though the discussion of the new method was limited to more traditional tumors.

Oncolytic NET cancer virus

The Swedish NET cancer virus did not come up during the formal sessions, though the question of viruses as a potential treatment vector was discussed briefly as a possibility. However, I raised the issue of that particular virus in private discussions with both Dr. Charles Fuchs, the head of the DFCI Gastrointestinal Department, and Dr. Kulke. Dr. Fuchs said he saw no reason the virus could not be patented and tested in this country—and Dr. Kulke concurred. He is meeting with Professor Magnus Essand, the developer of the virus, in a few weeks and said he would have a discussion with him about the virus then.

The entire bill has been footed by DFCI donors…

Both, however, pointed out other issues with the development of the virus: safety protocols and ethical considerations. The problem with viruses is that, like drugs, you cannot be sure what they will actually do when you give them to humans no matter what prior testing suggests. And unlike drugs, viruses can spread among the human population through various forms of contact. Further, they can mutate if they escape into the wild in ways we cannot anticipate.

Potential viral problems

They also reminded me of an attempt a number of years ago to use a virus to fight a genetic disorder. Someone died in an early trial because of his reaction to the virus.

The hope is that work will lead to new ideas…

Viral research in the US is subject to a laundry list of ethical and safety protocols drugs do not face to the same extent. Even if the virus can be patented here and a drug company be found to fund the trials, the testing will have those additional hurdles to clear.

But while there is a lot of promising research going on, especially in NET cancer, the financial side of things is anything but rosy.

Next: The Fiscal Cliff and NET cancer

NET cancer’s virus

NET cancer kills people. We can debate how many, but at a minimum it is about 1000 people a month.

Acne affects millions of teenagers every year. Some have cases so bad that it leads to depression and–in a very few cases–suicide. But for the vast majority it is merely a part of growing up. Generally, acne vanishes as young people mature.

That’s just wrong.

Thirty months ago a researcher in Sweden developed a virus that kills NET cancer cells in a test tube and in mice. That potential cure remains in a freezer at Uppsala University because no drug company has stepped forward to fund a human trial. They see too little profit to justify the expenditure. Two charitable groups are actively seeking donations from private individuals to fund a Phase I trial.

Acne’s virus

Researchers at the University of Pittsburgh have discovered that a virus that lives on the skin does to the bacteria that causes acne what the Uppsala virus does to NET cancer. Their anti-acne virus is still in the testing stage and no human trials have been done but they will have little trouble finding a drug company to fund those trials.

Acne sells product…

The tale of these two viral answers illustrates perfectly the problem of relying on market forces to solve problems. I have known many people with horrific cases of acne. They tried everything from daily scrubbings to hydrochloric acid. When Accutane became available I was enormously happy for them.

But a cure for acne is not a cure for NET cancer. It will increase the bottom line of whatever pharmaceutical company wins the rights, but it will not save 1000 lives a month.

The race to market

Supply and demand, however, will put that viral acne drug on a fast track for development and testing the anti-NET cancer virus will never see. There will be no 30+ month wait in a freezer for it. Acne sells product and makes ownership happy.

A cure for acne is not a cure for NET cancer…

In the just over a month since serious fundraising started for the NET cancer virus, iCancer and the Oncolytic Virus Fund have raised a combined total of $121,674. It will cost between $1.6 and $3.2 million to do the initial Phase I trial, so at the current pace we are still 15-30 months away from having the money for that, assuming the current pace is maintained.

Of course the results of that trial will only be recognized in Europe since the FDA does not accept the results of foreign trials, so we will need to find another, equally large chunk of money for a US Phase I trial.

NET cancer’s capital problem

We will also have to come up with the cash for the Phase II and Phase III trials. In Europe, best case scenario, we are five years from approval once the trials start. In the US, again best case, it takes about seven years from the beginning of the first trial.

NET cancer kills people.

The free market will ensure that the acne virus will be curing patients’ skin problems long before the potential NET cancer cure gets out of the starting gate.

That’s just wrong. NET cancer kills–acne doesn’t.

Twenty-two months

When Jane died from NET cancer 22 months ago today we both expected my time of mourning would be short. While we do not believe, as Christians do, in an eternal, joyful heaven, the experience of our lives had taught us death was as much beginning as ending. We have worked together before in this world–and will again. Her work was done for this go-round. Mine was not.

In the month before she went into the hospital for the heart operation we believed would open the door to further treatment and an eventual cure, we talked a lot about the future and what we hoped it would be.There were things we wanted to do together, places we wanted to visit together, books we wanted to write together. NET cancer would delay those things but not end them.

I will continue to mourn the death of Jane’s body.

And if that were not to be–if NET cancer did kill her–then I would move quickly through the stages of grief, secure in the knowledge of who and what we are. Her soul would rest for a time, consolidate and share what it had learned, look closely at the pattern of existence and determine what was next to be done and what form she would need to do that. We both believe in the gradual perfection of the human soul over lifetimes–that every soul has in it a Christ-nature or a Buddha-nature that is nurtured across time–that each of us has the potential to be who and what they were, but suited to the time of our own enlightenment.

The body as automobile

Our bodies are no more special than a car–a means for traveling in this world. When a car wears out–and any mechanical device will–we discard it and get a new one suited to what we need it or want it to do. I will admit I feel a little sad when I trade in my old car but that sadness has no staying power. When I give up this body I expect I will feel the same way. I know that is how Jane felt about hers–at least that is what she told me–both before and after she got sick.

–the loss of a body is shattering–

But I have learned a hard lesson since Jane’s death. While we can view our own bodies as mere vessels, it is much harder to view the body of the person we love that way. When the soul that animates the vessel departs we are left with the memory not of the soul but of what the body that soul animated did, the role it played in our lives, and the role it played in the lives of others. Our mortal lives, being wedded to the physical world, cannot experience the soul of another except through that other’s body and its actions. As a result, for as long as we live in the physical world, our memories of another soul are inextricably bound up with our memories of that other’s body.

One flesh, one soul

For husband and wife, then, whose lives together are as much about touch and warmth as about words, actions, and ideas–who have become as one flesh both physically and spiritually–the loss of a body is shattering–whether from NET cancer or any of the other deaths that flesh is heir to. I have said to people since Jane’s death that it is as though half of me were amputated when she stopped breathing. But that is a pale analogy that masquerades as truth. The reality is beyond what words can describe.

I have learned a hard lesson since Jane’s death.

An amputee misses that limb for the rest of his or her life. Even the best prosthetics are no match for the original item. But there are no prosthetics for this kind of amputation.

Moving forward

It would be easy, given that knowledge, to give up–and some do. Some commit suicide. Others climb into a bottle, a joint, or a syringe. Still others work themselves into a stupor–bury themselves so deeply in one form of work or another that they do not have time or energy to feel anything.

I am guilty, sometimes, of the last of these. Yesterday I lost myself in writing and researching and trying to understand the lives of others. Today, writing this, it has slowly come back to me that the way out of death and mourning is to live.

…every soul has in it a Christ-nature or a Buddha-nature…

I spent the weekend building and staining bookshelves. For the first time since Jane’s death I was truly living focussed in the moment again. That same feeling has permeated my writing this morning.

I will continue to mourn the death of Jane’s body. But I need to remember to celebrate her life and the continuing journey of her spirit–as well as the continuing journey of my own.

Tale of two cancer awareness months

NET Cancer Awareness Day is next month. In some states, it will be NET Cancer Awareness Month. But if you don’t already know someone who has the disease, you likely won’t know it.

My newspaper was printed on pink paper this weekend. Every NFL team wore pink this weekend. This morning, I was greeted with a pink Cancer Sucks bracelet when I turned my computer on. It’s Breast Cancer Awareness Month and it is impossible not to notice.

…we won’t give up…

Today will probably interview no one with NET cancer next month–unless they have done something else, in which case the subject will never come up. There will be no 60 Minutes segment. Even The View, The Talk, Doctor Oz,  and The Doctors will not expend a minute talking about NET cancer. Only about 12,000 cases a year are diagnosed, there are only about 120,000 people in the US who know they have it. It won’t sell soap, beer, or Cadillacs.

What is it about breast cancer?

I want to understand our fascination with breast cancer. Sometimes it seems as though it is the only cancer that exists in the US–even in months other than October. Lung cancer kills more people, but the perception is it goes with smoking–and those folks bring it on themselves. Colon cancer is awful but we don’t like to talk about that region of the body. Pancreatic cancer is also nasty, but you really can’t see it–and if you are diagnosed with it you are dead anyway–and Americans like easy success stories.

I hate this world without Jane.

Cervical cancer and prostate cancer are widely known and we have made real strides against both. But they are both “down there” and we just don’t talk about things like that.

But breasts are highly visible and have a psychological impact on both sexes. I remember listening to a woman back in the ’70s or ’80s who talked about how her breasts defined her as a woman–and how devastated she was psychologically by their removal. Certainly that threat to sexuality plays a part in all this.

NET cancer and the world I hate

My sister is a longterm breast cancer survivor. My sister-in-law will become a five-year breast cancer survivor this winter. I don’t like the idea of a world without either of them.

But I hate this world without Jane. That is not an idea–it is a daily experience. And I know that had we spent the merest reasonable fraction of what we spend a year on breast cancer on NET cancer over the last 40 years Jane might not have died. She might have walked with me in these last two Relays for Life. She might have walked these two Marathon Walks with me. She might have been a survivor.

But breasts are highly visible…

If we had spent the merest reasonable fraction of what we will spend on breast cancer this year on NET cancer that oncolytic virus would already be in Phase I or Phase II testing–or might have been approved already before Jane died.

Nothing fills this hole

So I hope those of you raising money for breast cancer research or undergoing treatment for breast cancer will pardon my jealousy and envy. We have mammograms that detect your cancer so early we have created a Stage Zero. We have surgery and drugs and radiation treatments that offer you the potential of a cure. NET cancer patients have no quick detection tests. We have no drugs or radiation treatments that do more than slow the disease down or ease the symptoms. Your events draw huge crowds–ours have trouble drawing dozens.

It won’t sell soap, beer, or Cadillacs.

November will come. We will hold our tiny walks and piggyback on larger events. We will struggle to garner coverage in small newspapers and on local television stations.

But we won’t give up: A death from NET cancer leaves just as big a hole as a death from anything else.

The double pain of memory

Steve Jobs died a year ago Saturday of pancreatic NET cancer. I remember that night better than I should. I was watching television in a vain effort to escape my memories of the previous fall. Then Jane and I had been preparing for what would prove our last recreational trip together. The swelling in her legs had progressed to the point she had stopped going to the basement. She still insisted on cooking but all the other household chores were increasingly falling to me.

…$79,000. That is good for barely a month…

There is something truly awful about watching someone so active become increasingly unable to do the things she loves.

We had heard in 2010 that Jobs was sick. We knew, shortly after Jane’s diagnosis, that Jobs likely had a version of what she had. But, to be honest, we paid it little attention. Jane’s own struggle devoured us both. We had little energy for the trouble of others. I worked with my students during the day but short-changed them at night. Papers took a back seat to Jane’s health. Steve Jobs was not our concern even remotely.

NET cancer before Jobs’ death

Jane had been gone almost 10 months the night Jobs died. CBS interrupted its program to make the announcement. Jane’s death passed nearly unnoticed outside of our small circle of friends and students–and her doctors, nurses and technicians. At least in Jane’s case everyone was told accurately what she died from. That was not the case with Steve Jobs.

I know–I sound like a vulture.

In the time since Jane’s death I had worked to raise awareness about NET cancer. I had looked into NET cancer’s finances and discovered they were worse than the general level of awareness. There had been no funding from the federal government for 40 years before 2008–and the amount after 2008 was a pittance compared to all but the least known forms of cancer. NET cancer foundations had scraped together barely $2 million in 2010–and 2011 was not looking much better.

NET cancer’s vulture

I knew Jobs would die from NET cancer eventually–there really is no cure for the disease no matter how wealthy you are and no matter how many strings you can see that you can pull, unless it is caught early. Jobs’ liver transplant told me it had not been. His death had the potential to put NET cancer on the national–and international–radar.

…2011 was not looking much better.

CBS–and the rest of the media–killed that. They reported Jobs had died of pancreatic cancer–so the profile of pancreatic cancer was what was enhanced.

I know–I sound like a vulture. And I don’t like admitting that tendency even to myself. But there it is.

NET cancer meets iCancer

Today, I discovered a new group trying to raise money for the oncolytic NET cancer virus I have written about here previously. The group, iCancer, is raising money in memory of Jobs to try to help come up with he scratch for the Phase I trial. So far, the combined groups have raised about $79,000. That is good for barely a month–but $3.2 million is still a long way off. I can’t vouch for the iCancer group, but the Oncolytic Virus Fund I’ve heard good things about from other foundations.

Jane’s struggle devoured us both.

The one thing I know after almost 26 months of having a name for the disease that killed my wife is that finding a cure for NET cancer will be anything but easy. We can use all the help we can get.

NET cancer and my vote

NET cancer is not the only thing that concerns me. There is the ongoing grief over the death of my wife. There is the anger I feel over what I increasingly see as a preventable death. There is dismay over the number of cases of cancer I am currently dealing with.

…a recipe for disaster…

But there is also the anger I feel increasingly on the political front. While I am not a one-issue voter–a candidate’s stand on NET cancer research–or cancer research generally–will cost my vote only if both candidates are in agreement with me on virtually everything else–increasingly what I am seeing both locally and nationally are candidates whose positions on cancer are as convoluted and meaningless as everything else that comes out of their mouths.

Where there is smoke

My first encounter with this came same months ago. I was in Boston to lobby for a number of initiatives the American Cancer Society was pushing in the state budget. Among these was a plan to increase taxes on forms of tobacco other than cigarettes. For reasons that escape me, cigarettes are taxed at a higher rate than cigars, pipe tobacco, and chewing tobacco in Massachusetts. The revenue raised is less of an issue than the fact high tobacco taxes act as a powerful preventative for young people. And the tobacco industry, because taxes are lower on non-cigarette products, has been marketing those products to teens and tweens to take advantage of that fact.

…Obamacare does not deliver money for research.

It would seem such an action–clearly in the public interest–would be a no-brainer. But one representative told me he would vote against the move because there are smoke shops in his district that might be adversely affected by the measure. Had I been there representing myself instead of ACS my next question would have been, “So you are in favor of drug dealers in your district as well?”

National cancer questions

ACS asked both Mitt Romney and Barrack Obama a series of questions about cancer research funding recently. Their answers to those questions were released earlier this week. Both candidates responses consistently exhibited something known in the debate trade as “the pivot” to avoid giving any real concrete answers to the questions. They paid lip-service to the question, then pivoted away from the question to deal with what they really wanted to talk about.

Both made the right noises for superficial readers.

For example, Mr. Obama consistently found a way to get back to his healthcare program. He talked about how it would help prevent people from going broke paying for their treatments.

Mr. Romney was, frankly, somewhat worse. He somehow managed to turn one question into a critique of Mr. Obama’s energy research program. He also made noise about how important the marketplace is in cancer research.

Say anything…spend nothing?

Neither made any clear statements about preserving or increasing funding for cancer research. They used a whole lot of words to say absolutely nothing without offending anyone in the process. They both seem, on the surface, to care about the issue, but neither one will commit to actually even keeping support where it is right now.

Mr. Romney was, frankly, somewhat worse.

I am not surprised by this. No one in their right mind is going to say: “I think cancer research is a waste of federal dollars. We should eliminate all funding for it.” But what disturbed me was the way they couched their support. Both made the right noises for superficial readers. But neither gave support that was more than luke warm. When push comes to shove on balancing the budget I have no confidence either man will stand up for cancer research.

And that is worrisome.

Both dodge the real issue

It is worrisome because the vast majority of money for cancer research–big or small–comes from the federal government. I am thrilled that insurance companies can no longer cut people off at the knees when they get cancer, but Obamacare does not deliver money for research. It does not require that insurance companies pay for treatments given under trials.

…smoke shops in his district that might be adversely affected…

And I have seen the effectiveness of relying on the private sector for money for research. No drug in current use was actually developed for NET cancer. Instead, drugs are developed and tested for other things. Once they are approved for something profitable they may get tried on NET cancer–or they may not. Octreotide, for example, was originally developed to deal with the side effects of chemotherapy, not to treat NET cancer.

Even bigger problems

I might worry less about his if it were not symptomatic of a larger problem. In looking at the , both candidates pivoted consistently. And neither was particularly clear about what they really believe or would really do with the next four years–Mr. Romney more so than Mr. Obama.

I am not a one-issue voter…

Were cancer the only place they were dancing around the issue it would be one thing. But the way both men danced around seemingly every issue…that is a recipe for disaster–not just for NET cancer, but for everything else as well.

Caring for Carcinoid NET cancer makes grants

The development of animal models for NET cancers over the last year has opened a number of research doors the Caring for Carcinoid Foundation wants to try to exploit. The foundation announced three grants last week totaling $1,050,000 all of which are involved with the mouse models.

The first, for $300,000 over two years, will fund work at Cold Spring Harbor Labs by Dr. David Tuveson to further develop mouse models toward identifying genes and pathways that cause neuroendocrine tumor formation following transposon-mediated mutagenesis in adult enterochromaffic cells.  The idea seems to be to try to figure out what causes NET cancer cells to form and develop into tumors.

The second grant will go to C. David Allis, Ph.d., at Rockefeller University. He will use an animal model to work toward an understanding of the tumor suppression activities of ATRX and Daxx in pancreatic cells. The thinking is that when these stop doing their job NET cancers develop in the pancreas. Allis’s work will look into that aspect of the disease.  The research may also reveal some things about how other cancers develop as well. Caring for Carcinoid’s grant is for $450,000 over two years.

The third piece of research Caring for Carcinoid will fund also deals with pancreatic cancer. It will use animal models to look at MEN1 and PTEN–as well as at Daxx and ATRX–in the development of pancreatic NET cancers. Dr Kwok-KIn Wong at the Dana-Farber Cancer Institute is the recipient of this $300,000 grant. The hope here is to develop a new line of drugs for treating pNETs.

All three grants will require refinements in the animal models that have been developed over the course of the last year. In the long-term, the development of the model means research on NET cancer should develop more quickly since previously all testing relied on human beings who had the disease.

National NET Cancer Patient Conference unveils major news

In a separate development, a new, more convenient test for 5-HIAA was unveiled at the  2012 National Carcinoid/Neuroendocrine Tumor (NET) Patient Conference in New Orleans last month. Dr. Eugene Woltering from the NET cancer program at Ochsner-Kenner and LSU in conjunction with the Interscience Institute has developed a less complicated test for the serotonin by-product. The test has been tried on 200 patients with what the press release terms “remarkable” results.

Until now, the only way to test for 5-HIAA was by collecting all of a patient’s urine for 24 hours following three days of avoiding certain kinds of foods that could skew the results.

The other major Ochsner-Kenner unveiling at the conference was a system of lymphatic mapping developed to instruct surgeons on just how much intestine they need to remove when going after NET cancers in the small bowel.

Details on both of these are sketchy at the moment. If anyone can get me a link to more information, please contact me at walkingwithjane@gmail.com.

The difficulty now will be getting the word out to physicians. Too often, patients are the means by which new knowledge about NET cancer reaches primary care physicians. This is something else we need to work on.

Injustice makes my blood boil

Few things I have encountered in my life have demonstrated to me how screwed up the United States’ health care and political/economic systems are than my experiences with NET cancer.

First, there was the joy of discovering we have spent virtually nothing on NET cancer through the federal government in over 40 years. I have said here before that I consider 1968 to have been the year the government signed my wife’s death warrant in the name of cost-benefit analysis. I have also stated many times how glad I was that Jane and I opted to pay a bit more for our already exorbitantly priced health insurance so that her illness did not wipe us out financially. There is no other way I could undertake the work of fighting the disease now rather than fighting to keep a roof over my head.

You want an argument for national health?

Then I discovered the headaches of being an orphan disease drug companies have no desire to develop drugs for because there is no profit in it for them. The result is ideas and treatments sit on the shelf for years that might offer patients some small relief of their symptoms if not a real cure.

And now this

I have spent the last two days updating the Resources pages about some of the most recent discoveries about NET cancer and our fight against it. There are some good things to report on a number of fronts that I will write about over the next few days. However, in among those stories of progress I encountered two blogs that were new to me–and that made my blood boil.

NET cancer patients are screwed in so many ways that it is hard to count. They suffer from poking and prodding and endless incorrect diagnoses. By the time someone figures out what the problem is they are often beyond all but experimental hope. And of course, in most states, no matter how good your insurance, trials and other experimental treatments are not covered by insurance. Thank God we live in Massachusetts.

And that is just wrong.

The two bloggers in question, Ann and Brian, live in California. They both detail the years of less than benign neglect before their diagnoses with advanced NET cancer. Hers had even invaded the vertebrae of her spine before she got an accurate diagnosis.

The cost of treatment

Both qualified for the PRRT trials in Houston. Both, however, were faced with paying for the treatments out-of-pocket–at a cost of $60,000-$75,000. Ann describes in vivid terms what those treatments in Texas were like. She later discovered she could get the treatments in Europe for less money–even including travel and lodging–than she could here. Needless to say, she took her second treatment in Europe–and will get the rest of them there as well. What she also describes is a European treatment with far milder side-effects than she had from the treatments here.

NET cancer patients are screwed…

Both are thankful for the treatments they are getting. Both are thankful to the many who have made donations for their treatment. Both are thankful for the opportunity to continue living on this side of the grass.

But both are facing a series of treatments that will likely leave them with no retirement savings and a huge wall of debt–and no certainty that they will not need those treatments again at some point in the future.

And that is just wrong.

Obamacare is not enough

NET cancer is nasty enough without worrying about how you will pay for the treatments.

You want an argument for national health? NET cancer makes a strong case.

 …treatments sit on the shelf for years…

All cancers do.

What we have now is better than what we had before–but it is not good enough–not by half–not when cancer patients have to put up bottles in local stores and host dinners to pay for their treatments.

How many flea bites does it take to kill NET cancer?

Sometimes I feel like a flea trying to kill an elephant. The problem of NET cancer seems so big and what we can bring to bear on it seems so small.

How many flea-bites does it take to bring down an elephant?

Every flea plays its part.

Today a small piece of magic happened–not a big enough piece to kill an elephant with–but enough to keep the flea trying.

I sent off a check to Dana-Farber today. Normally I would will have waited another couple of months. But someone was offering a two-for-one match that would triple the impact of what I could do.

Twenty-two months, $100,000

With that match, our efforts over the last nearly 22 months will have generated over $100,000 for the fight against cancer–the lion’s share of it going to the fight against NET cancer in particular. We could not have done this without the help of all the people who have answered the calls we have put out over the months since Jane died. It started with those who donated to Dana-Farber in Jane’s memory after her death. It continued with all those who helped us build our Walking with Jane team for the Greater Taunton and Greater Fall River Relays for Life and those who supported our first Marathon Walk just over a year ago.

It started with those who donated…

Then there was the group that put together the team for Bridgewater State’s Relay for Life and the continuing efforts of those who worked with us on the Greater Fall River Relay in June and this year’s Marathon Walk completed just three weeks ago Sunday. There were the former students who designed and built this website and the others who designed our logo and our t-shirts and our jewelry and wrote our newspaper articles. There are the friends who have loaned us their houses and given us their ideas. There are the people from the American Cancer Society, from the Dana-Farber Cancer Institute, from the Caring for Carcinoid Foundation, from the Carcinoid Cancer Foundation, and the dozen other groups and organizations who have invited us into this community none of us wish needed to exist. There are all the people who have walked with us around a track or on the long trek into Boston.

Annoying NET cancer

We have inflicted 100,000 flea-bites on this elephant. It has not yet been enough to even annoy the beast. It will take millions more to do that–likely billions before we can bring cancer to its knees.

But we have made a beginning. There are others in this fight–others who have been at this far longer and have bitten the elephant many more times than we have. That does not detract from the small accomplishments of this newest flea–only reminds us that we are not alone in this fight. It does not matter which of us delivers the fatal kiss–none of us will know which bite killed NET cancer, killed cancer in general–and it really does not matter to me. I just know I want NET cancer dead. I just know that I want all these cancers to die.

…a small piece of magic happened…

Every dollar brings us one step closer to that goal. Every idea brings us one step closer to that goal. Every piece of evidence brings us one step closer to that goal. Every piece of research brings us one step closer to that goal.

Every flea plays its part.

In the end, NET cancer dies.