Pat’s Place: My Opinion On Whether Treatment For Myeloma Is A Privilege Or A Right – What’s Yours?
As promised, I would like to share my thoughts on the important question: Is treatment for multiple myeloma a privilege or a right?
After reading some of the comments and emails following my column about battling my health insurance company, it is clear that a number of readers strongly feel that treatment for multiple myeloma—or any type of health care, for that matter—is definitely not a right.
Although my opinion differs, I shouldn’t be surprised by this. Support for free market principles runs deep in this country. A large, vocal minority of Americans view government intervention and regulation in general—but especially when it relates to health care—as morally wrong.
The proof is the visceral hatred of the federal government’s new Patient Protection and Affordable Care Act, which has come to be known as “ObamaCare.”
Few will argue this new legislation is perfect. I certainly won’t. But there are a number of provisions in the bill that directly help multiple myeloma patients.
I have a good friend who is an outspoken conservative and free market advocate. He also has multiple myeloma. I have noticed he has significantly softened his stance in recent years, especially where money for federal cancer research or patient aid are concerned.
To me, this makes sense. I support any help that I or my fellow myeloma patients can get! For me, assistance for my multiple myeloma brothers and sisters has become a top priority—philosophical principles be damned!
But you can bet not everyone shares my conviction about this.
I began to write about the philosophical opposition to too much government help or involvement. But since I don’t agree with this position, who am I to try and articulate how someone else feels? I’m hoping some of you will share how and why you feel the way you do.
I understand why someone would be concerned about the government spending too much money or intruding on their lives. What I don’t understand is who gets to decide what is too much, or when government has gone too far.
You see, I don’t care! I am more concerned about my friends than I am about abstract political philosophy. I want more money (a lot more!) to be spent by the federal government on cancer research. I want uninsured or underinsured cancer patients to have access to life-saving care.
I don’t care if it adds to the federal budget deficit, or if it isn’t philosophically the right thing to do. I’m one of those guys who would argue, “Compared to the huge amounts we spend on the military or other entitlements, increasing funding for these things is just a monetary drop in the bucket.” Just like many don’t trust the government to provide help efficiently and judiciously, I don’t trust the drug companies to do the same.
Now don’t get me wrong—I have a number of great, dear friends who work in the pharmaceutical industry. And considering I have already outlived my median life expectancy, there is no doubt in my mind that using Revlimid (lenalidomide) and Velcade (bortezomib) have helped save my life.
But I believe getting rid of regulations that protect me and my fellow patients, and/or allowing the free market to police itself, is a bad idea. Sort of like letting the fox watch over the hen house.
And I also believe that relying on the charity of neighbors and friends is less efficient than allowing government to provide a safety net for underinsured or uninsured multiple myeloma patients.
I would argue that providing treatment for multiple myeloma patients is both a privilege and a right. Our health care system in this country is pretty darn good—as long as nothing goes wrong—and you can afford insurance or the care you need.
Like anything else, I believe our system can be improved. Our system of government isn’t a religion. It’s a tool to help improve the quality of life for all Americans.
Just another reason I would like to see much more compromise among legislators—not less—as we continue to work through the demographic and economic challenges we face ahead.
In the meantime, sharing information and helping our fellow multiple myeloma patients any way we can should be a top priority. Because working with our system is the best option we have—at least for now.
Feel good and keep smiling! Pat
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Wow Pat.
This is one hot button issue that certainly brings out the inhumanity in folks. I choose to stand on the sideline and observe who they are while praying their paths and mine never cross in this lifetime. Typically, these folks also have pets that they absolutely adore and will do anything for as well and to add insult to injury they also tend to be died in the wool right to lifers. Go figure.. Which simply makes their hypocrisy and inhumanity that much more blatant. It is also indicative of tremendous cognitive dissonance such that the individual is lost in the labyrinth of their own twisted mind.
Their mindset is summed up by the southern expression, they would refuse to urinate on a human being that was on fire, cause you have the right to die.
This is really a "Catch 22" isn't it. We don't want the government involved in our personal lives, but we do want any and all help we can get when it comes to our health.
As far as I'm concerned, it's both a privilege (we live in a great country with many health options) and a right (we've paid our dues). There are parts of "Obamacare" that concern me. Will there be someone, other than his oncologist, that decides if my honey (age 73) is too old to continue treatment?
Thanks for another thought provoking column. Yep, I vote for privilege and right!
Right on Sarah: Pat I have much more confidence in the private sector (drug companies) than you do. If the government would stop with the inane regulations we would develop drugs faster and cheaper without added toxicities. We have all the money we need for lots of cancer research if we would shift our priorities and simply balance our budget. I am not willing to borrow from my grandchildren to pay for my treatment. I suspect that this may be true for many of the elderly MM patients.
Gary,
Just curious but can you share what the inane regulations are that prevent drugs from being developed faster and cheaper.
thanks, just wondering
Already a wide range of opinions... Do I trust a company that would stop producing an important chemo drug, simply because it is going to/or has become generic? Have you been following this issue in the news? No profit, no drug and patients die. Nothing's perfect, including the government. But trust drug companies or banks unregulated? Not a chance! Is it fair to lump all drug companies or banks together. NO! Are there some caring, wonderful people working at a lot of these companies? You bet! Guess who gets the pink slip first? Pat
Hi Suzie: Glad to share. The FDA uses a statistical approach called randomized clinical trials based on a frequentest interpretation of probability and developed by Fisher in the 1930's for agricultural experiments. In an attempt to be totally unbiased patients are chosen at random to enter various "arms" of a clinical trial. Two arms, for example might be treatment agent A at one dosage regimen and the other might be treatment agent B at a dosage regimen. So far so good. Then a number of patients are chosen for each arm so that we can choose between the behavior of the two arms after a "fixed" period of time (e.g.two years. If one treatment is better than the other it takes two years to find out and then we only know the result for one dosage regimen. The beauty of the approach is that it is statically "pure", shuns any inputs from the clinicians and we have done it like this forever.
In the late 1980's another approach to clinical trials was developed by Spiegelhalter et al. in the U.K. Their work was based on the work of Sir Thomas Bayes and Laplace in the 1700's. It had also been used extensively in the military and in engineering circles but not in medical arena. Here the trials are called "adaptive" clinical trials. Using the above example, patients are placed in the two arms at random but the length of the trial is not specified. In fact the clinical trials changed or "adapted" as soon as the two groups begin to behave differently. This might be as short as a few weeks or months. This allows one to examine new dose levels as well as allow patients to cross to the "better" arm. In other words the clinical trial is a living system with its course being driven by the patients clinical results and interpretation from the doctors. That was the kicker for the FDA. They want nice well organized protocols where one can put numbers in the boxes at certain times and be totally immune from experienced input from the clinicians. I can't image how today's patient's in the "poor" group must feel when the other group is responding well with good efficacy and low toxicity while they are forced "by protocol" to stick with their treatment. How sad.
Since the time to market and cost are dramatically faster and cheaper and the information content higher (better dosing so we don't get have to wait years to get the right dose e.g. dex and Velcade) the pharma companies are trying to get the FDA to change their stance. It hasn't happened. Until it does we will be left with old expensive clinical trials and it will take longer for us to get the drugs we need.
Hope this helps.
I would like to see a number of different research models allowed, including individualized patient studies and dosing. We have a long way to go... Pat
Suppose you were standing at the edge of a lake, river, or swimming pool and there was someone in the water, drowning. By your side is a rope, attached to a life ring. Do you throw the ring out and save the person, or do you stand on your "ideals" and refuse to throw the ring, because the person should be able to save him/herself?
Now suppose you are a big pharmaceutical company with lots of technology that could save many lives. Do you make it available at a reasonable cost that all can afford, or do you gouge the market and charge as much as possible from those who can pay, while leaving those who can't pay to die?
Frankly, I don't see any moral or ethical difference between the two situations. If treatments for health conditions exist, withholding them from other human beings is just as wrong as not throwing the life ring.
FrankH
Wow FrankH you don't think much of big pharma! How about little pharma? Companies like Pfizer and Lilly are cutting staff as fast as possible with no new products in the pipeline. Lots of technology is a thing of the past. I suspect your attitude is "serves them right". My only question is who is going to develop the new MM drugs I need? I hope the little guys can do it. That is why I want to make their work easier by getting the FDA to work with them.
Thank You Gary.
I agree with the more responsive 'adaptive' protocol. I suppose one thing that needs to be determined is who benefits most from the purely statistical methodology presently in place. IOW's there has to be some group out their lobbying to keep that system in place despite the more progressive 'adaptive' protocol. Do you have any idea who that might be? It doesn't seem like that benefits big pharma so I can't see them as lobbying to keep it.
I do know that trials are stopped if one arm has a statistical clinical significance early on as it is unethical not to treat the patients in the arm with the poor response.
FrankH, I do see a moral difference between standing on your 'ideals' vs capitalistic gain..in the former case you have no hope of survival, in the latter if you have the money you can survive.
suzierose: You raise a great question and one that I have been asking myself and anybody else I can corner. Big or little pharma definitely wants adaptive trials. I used to think there might be a conspiracy somewhere in the FDA but I think the answer is simply entropy. The FDA is comfortable doing things the way they have in the past and they don't want to change. I think docs are the same way. They love to titrate patients and they are not interested in using genetic information and modeling to dose each patient individually.
The only other possibility for FDA not to accept adaptive trials is that the clinicians have some input into the course of the trials and the FDA doesn't trust them to be honest or consistent
I have also heard that clinical trials are stopped if one arm has a good response. I suspect however this behavior is driven by the patients demanding the other arm or threatening to pull out of the trial. I guess I am a little bit cynical. I am not sure ethics enters the decision making process.
I'm so pleased that our discussion hasn't deteriorated and become too partisan--yet. Thanks so much for sharing your thoughtful opinions. Who's next?
Gary:
I used to work for big Pharma, and big Diagnostics also, so I know from firsthand experience whereof I speak.
The fact is that big P&D only rarely discover or develop any of their own products, and when they do it's a wonder that the product manages to escape.
In fact, most products are developed by little P&D, or academic research, generally with lots of taxpayer $$ and other support, with the aim being to get picked up by big P or D.
Far from "serves them right," my attitude is that it's a shame that the people who work in these companies have to suffer for the mistakes their managements make as results of their greed and lack of foresight. It's also a shame that we, as taxpayers, do not reap the benefits of the support we provide.
I believe that any theory of “morality” that doesn’t include “empathy” does not bear close inspection. Health care is a totally different situation than ordinary “products”. The need is unpredictable and abrupt. It often hits when people are least able to pay. The cost is usually unknown in advance. Comparison-shopping is impossible for life saving treatments. And health is the thing that makes all other things possible. So, free market so-called morality really isn’t appropriate. Everybody needs to pay in and everybody needs to have the right to a reasonable amount of health care in return. The mechanism and the definition of reasonable are negotiable, in my opinion. Obamacare isn’t exactly the way I’d like to see it, but it’s better than before.
I do expect eventual rationing. If it means that somewhere down the road, some bureaucrat says “she’s been fighting this beast for 20 years, already had an auto stem cell transplant, tried all the standard available drugs, if she wants to try an allo using her sister’s cells, she’s going to have to pay for it herself, well that’s something I could accept. And I’d accept it a lot more readily if it is because they’d rather use the money to treat a younger person with children to raise, than if it is because they want to pay out higher bonuses to insurance executives.
Multiple Myeloma is a difficult disease to figure in to an insurance situation, because it is so expensive and getting more so the longer people live. It’s a poster child for the high cost of medical care being directly related to success. Thalidomide, particularly, is a prime example of price gouging and abuse of the patent system in protecting profits. But this is a temporary thing, because in 15 years or so the patents for the drugs currently in production will expire. And there are a LOT of really good drugs currently around. So, then we’ll have the cost, and probably the research / availability, affected by the reasonable cost generics of what we currently see as miraculous. So, even though we currently are seeing a huge increase in the total cost of treating MM, that trend will taper off.
FrankH: I worked with big pharma as well. You are so right about the terrible decision making processes on new products. I question greed as the motivating factor but agree with lack of foresight. It has not been my experience that government dollars flowed into the new product pipeline. In fact new product development was incredibly expensive because of a host of government regulations (yes and poor decision making).
The alternative to the capitalistic system is to let the government take the lead in developing new products. In many countries anything to do in the health care arena is a government responsibility. Interestingly these countries use drugs developed in the US.
You worked in big pharma. Would you really want the government to be responsible for setting priorities and developing our next generation MM agents?
Gary:
A pure corporatocracy is as intolerable as total government control. Neither system, in its pure form, works. Either businesses run amok, or government does. Looks to me, right now, like businesses are running amok due to lack of oversight. Americans are dying, right now, because they cannot afford healthcare. How in this country can this be possible? Only because we succumbed to the ideology of "lassez faire" and failed to implement reasonable cost controls. The lack of "reasonableness" in the FDA is just one manifestation of this. Other manifestations are the outrageous cost of many pharmaceuticals, and the artificial "shortages" of drugs like doxil, which is akin to the artificial gas shortages of the 70's and the Enron implemented power shortages in California.
You can't trust government, but you sure as heck can't trust big business (and many small businesses) either. These are human organizations, and they are no better, or worse, than the people who work in them and the people they work for.
FrankH
Frank, Gary and Jan all make excellent points! I hope other readers take the time to review--and add too--this deeply insightful dialogue!
Here in Canada, we do have a universal health care system , and the new drugs like revlimid are gradually being accepted as treatments by our provincial gov'ts. Each province has to approve a new drug like that, since they are controlled drugs and not available by regular prescription. When I took it, it was only available to me from the cancer ctr. pharmacy. I think that ultimately being treated by the newer better treatments will save the system money in the long run. After all, if i am better, and not in hospital or undergoing expensive treatments due to the worsening of my health problems, then it saves the health care system money. That is a strong motivator for the gov't to keep me better, even if the SCT and the chemo drugs were very expensive... being in hospital for a long time is also very costly to the system, and we do usually have a bed shortage. When I had my SCT I was only in hospital for four days, since it was deemed that I could be looked after at home, and just go into the hospital for the daily blood tests, etc. I am very grateful to all the Cdn. taxpayers who keep this system up and running, and really hope that I don't run into having to pay for expensive drugs down the line, although you never know the future! We sure don't complain about paying our taxes in our family!
I sympathize with the Americans who are faced with a myriad of options, or not enough, depending on the situation, but really can't comment on the politics of it all since I am not in your system. And I respect the fact that medical research continues internationally. Did you know that Velcade (bortezamid) was developed due to proteosomase research done by scientists in California and Israel, a joint project. They were awarded the Nobel prize in Chemistry for that. TheN, I think that this research was picked up by Canadian and American scientists to develop the actual prescription drug (correct me if I am wrong). That one drug alone must have saved many lives by now...I know it saved mine!! That is one reason why our local support group raises funds for myeloma research which is being done here at our university. Apparently it is a very exciting time for myeloma research...if you look on 'Myeloma Canada', you can read an article by Dr. Donna Reece from PrIncess Margaret Hospital in Toronto, a prominent researcher, on that topic.
Yikes I’m sick, and look at the drug costs!##!!!**
Which system works??!!!
ANY way is better than the way it is!!!
Government can solve it! No it can’t. Big Pharma is the devil. No it isn’t!!
My mother used to say to us kids (9 of us) when we were squabbling, “Little children, love one another.”
Political opinion is a legitimate subject for Americans, especially in a political year. However, I really think it’s out of place in this forum. Just my political opinion, ha ha.
Love you, Pat, but I think you dropped a stink bomb among fellow sufferers.
Health and healing to us all,
In love, Julia
Interesting point about Canada system, Nancy. I think Americans tend to be "what's in it for me," independent types. I like the way you feel it is important to save the system money. Guess if we had a system, I would feel that way. But for now, it's protect yourself, help your fellow patients and get whatever you can get. Sad in a way... Think I like that part of your system better--but choices being available may "trump" the touchy/feely stuff! Thanks for reading- Pat
Julia makes a good point... Politics and squabbling over which system is best gets negative and may be counter-productive. But what the heck! I'll go back to the other stuff next Thursday- Pat
If you accept the fact that we have limited resources then it is a choice on how much is provided to treat cancer patients v.s. say new borns. The choice could be to treat a cancer patient to give them two more years of life or save the lives of twe new borns. A difficult decision for someone to make. The UK health system makes this decision. Look at all the people who gave their life to make someone else,s better. WWII!!
If you had $500,000 in saving's for your three children's college education and you have cancer, would you spend the money to extend your life two years or leave it for your children's education? Another difficult decision.
If we paid our dues does that mean we can take more out of the pot than we put in?
If we were all as productive as we could be more health care could be provided to everyone. However, it seems we have more unethical people who want to live off the toils of others. For one, our current man made financial crisis.
It is an interesting moral and economic question... That's why I couldn't resist "dropping this stink bomb," as Julia described it- Pat
First time I have done more than scan the article quickly... and, I will only say, "Bravo"!
I feel the pharmaceutical companies really have to get their "acts" together. Perhaps if they were to advertise less,drug costs could be more realistic...
Plus,there are other many other factors that I won't even touch here...
Some friends have ordered drugs from out of the country ... (same company, same packaging,made in same location) for less! Something is wrong here.
Sometimes for a lot less, Charlotte. Best I can tell, our healthcare system is designed to get as much as insurance will pay. It isn't like other products or services, where there is a standard mark-up based on material cost or, in this case, cost of research and development. I have often been puzzled by why 25 mg of Revlimid basically costs the same as 10 mg. Shouldn't it be about 60% less? Thanks for reading- Pat
I was diagnosed with MM about a year ago and spent much time during the early months of my treatment worrying about the high costs being charged to Medicare and my private insurer. Maybe it was time to just climb on that iceburg and float out to sea. But then one day I had a revelation. I'm not just a hapless geezer sucking at the teat of the government and the insurance company. Rather, in the jargon of our current political debates, I'm a job creator! My illness creates jobs in the government, in the insurance industry, at big pharma, and in lots of smaller R&D operations. Weekly 200-mile trips for treatment support the oil and auto industries, and I even support the hospitality industry when I have to spend the night before or after a treatment. In fact I am such an awesome job creator that I should probably get a tax break.
OK, that's a little tongue in cheek, although the thought actually did ease my guilt about the high cost of treatment. But I do have a serious thought here. As citizens we should participate in the debates about the best ways to deliver health care, FDA policies, and the moral issues involved in high-cost treatments. But as MM sufferers our only job is to work within the existing system to get the best care for ourselves and our MM buddies.
I love that, Holt! Glad things are working out for you. And remember--no guilt! Pat
we are all part of a 'brave new wave' of myeloma patients, and the newer treatments are being developed even as we try to recover and stay healthy from such an awful ailment. Since the research is fairly new that has gone into the newer drugs, they are still quite expensive. Probably in time the prices will come down due to market realities, such as generic alternatives. In the meanwhile, we just have to stay positive and realize that we are breaking ground for those who follow...therefore shouldn't feel guilty at all! Interesting for me to find out that one of the major benefactors in this area was Sam Walton , the founder of Walmart. He suffered from MM and I think his family has helped to develop the medical facilities in Arkansas, where he was from. (Am I right about this?? Makes me feel better about shopping at Walmarts sometimes). Another person who has raised lots of funds is Diana Krall, the jazz piano player/singer, whose mother had the disease. Those who are in a position to help quite often do...which is very heart warming and encouraging to people who are struggling with the diagnosis and the disease in general.
I was not aware Diana Krall was fundraising on behalf of her mother. Interesting, Nancy!
Yes..Diana Krall and her husband Elvis Costello, had a big fund raiser in Vancouver several years ago. I see that she is on the board of MMRF too..so is still involved in fund raising no doubt. She lost her Mom to MM in 2002. We have seen her in concert a couple of times and she always mentions her.
Diana Krall's mother was treated at the Vancouver General Hospital in British Columbia and in recognition of Diana's fund raising a section is known as The Krall Centre. I had my SCT there and the Krall Centre was designed to make patients and their families as comfortable as possible while being treated. Many thanks to the Krall family!
Great to know someone can make the best of a bad situation...
Hi Nancy,
You are correct about Walton, point of fact, he lured Barlogie and his entire team to Arksansas, so he would not have to travel back and forth to Houston for therapy.
That is how Arkansas became one of the 'premiere' sites for MM.
Walton gave Barlogie a boat load of money and carte blanche to do as he choose.
Thus we have one of the most intensive chemotherapeutic regimens for MM in AK.
Thanks for the info, Suzie Rose! I hadn't heard of Barlogie but wil read up on him also. I had heard a lot about the treatment centre in Arkansas, and it's like a piece of a puzzle falling into place to know how it started. My husband and I had lunch with a nice doctor from the Mayo Clinic a couple of years ago at a conference held here, and it seems that there are centres of excellence that focus on MM, so of course it is good to be aware of them and learn what we can about them.
Information is power, ladies! Glad the word is getting out that it is important to seek-out experts in the field...