Medical Innovation Ecosystem

Some alarmists complain that the cost of new, innovative cancer treatments will soon bankrupt the health care system, arguing that we must find a way to limit patients' access to them. When we point out that the new treatments represent only 0.5% (one half of one percent) of health care costs, those people claim that it doesn't matter, because the expense of new treatments is increasing at an increasing rate, and we must do something.

Horsefeathers, I say. The sky is not falling. Instead, the system is working just as it should, exactly as designed. A company innovates, inventing a new treatment and, after years of trials and against tall odds, finally makes a good, healthy profit on a treatment that saves and extends lives. This provides the financial and technological footing upon which that company can further innovate, advancing medical understanding to create an even better treatment, or a new treatment for another disease. The medical innovation ecosystem also includes governments, academia, research hospitals, and more, but the pharmaceutical companies always do the heavy lifting. That's the system we have, and it's working. Let's not mess with it.

Deep in discussion at ASCO

Costs of new treatments may indeed rise, but those new treatments will increasingly keep us out of hospitals and clinics, reducing those costs. Further, we will lead healthier, more productive lives, earning and spending, thereby contributing to the economy. Even more, as innovation extends our lives and improves its quality, we and our loved ones will enjoy more birthdays together, more weddings, graduations, anniversaries, more celebrations of all kinds, and lots more just plain good days. My life is worth it, not only to me but to those who love me. So is yours.

Oh but, the complainers say, there are unethical companies that are not playing fair, reaping excessive profits, or pushing expensive treatments which are no better than those they purport to replace. They imply that all of the pharmaceutical companies behave like that, but of course that is false. Indeed, some companies even promise that all patients who need their treatments will get access to them regardless of insurance status. If there are unscrupulous companies, let us find ways to "encourage" those companies to join with the ethical ones (as a lawyer I have ideas), rather than penalizing all of us patients. We have done nothing wrong and we simply want and deserve the best treatments available.

The patients' mantra is My Life Is Worth It. I wrote about this a few days ago here. We believe, above all, that we patients need a seat at the table wherever alarmists are trying to convince policymakers that the cost of cancer treatments must be reined in at the expense of patients. Here is the petition and here is where you can sign it. If you haven't, please do. Thanks!

Comments please.

My Life is Worth It

My wife, my daughter, and I were exhibitors at the annual meeting of the American Society of Clinical Oncology (ASCO) last weekend. At the invitation of ASCO, insurance companies and doctors were trying to invent a framework for limiting patients' access to the newest and most expensive cancer treatments, thereby providing those treatments only for those patients whose lives are judged worthy of them.

In the booth, I'm on the left

Unfortunately, we patients have been left out of that discussion altogether, so we were in a booth, making the point that patients should most definitely have a voice in any such discussions, and also pointing out serious errors in the "facts" put forward by the insurance companies and others. For example, people favoring mandatory limitations allege that the cost of new, innovative treatments will soon bankrupt the health care system, while the truth is that the modern cancer treatments represent only one half of one percent (0.5%) of today's healthcare costs.

At our booth we encouraged interested doctors and others to sign our petition, explaining that we want and deserve a seat at the table, to keep the facts straight and to tell our stories about the real value of our lives. Nearly everyone who heard our story signed the petition.

• Here is a copy: Petition
• If you would like to sign that petition, please follow this link: MyLifeIsWorthIt.org.
• For more information about this issue please visit: ValueOfInnovation.org.
  
• For more information about patient-centered health care, please visit the Center for Medicine in the Public Interest: CMPI.org

Thursday, May 29, 2014    Pomalyst Study Cycle 81

Pomalyst is one of the new, innovative, and targeted treatments. As part of the study I receive it free, so I don't know what it costs, but I suppose that, like most new therapies, the insurance companies would prefer not to pay for it when they can avoid it. Therefore, my interest in this issue is more than academic - I would like to be sure that I will continue to receive Pomalyst for as long as it does me any good, whether or not the study continues. In the eleven years since diagnosis two grandchildren have been born, and because of Pomalyst the older of those knows me, grandpa, which is a precious gift to both of us. Also in those eleven years I have led an active, vital life, running 82 marathons with my sweet wife and daughter, 55 of those while taking Pomalyst, the little daily miracle pill that continues to save my life.

IgG was essentially unchanged today, 1320 mg/dL, compared with 1340 last month. M-spike was up from 1.0 to 1.1 g/dL, but I think it should have been 1.1 last month anyway. Light chains behaved themselves, too, so the bottom line once again: My myeloma is still stable going into the seventh year. Yay!

We discussed three issues with Dr. YLH:

• Heart rate: Last month my heart rate measured 38 in the electrocardiogram and again in the doctor's office. This is about five beats slower than usual, so we decided that I would keep a log for a month. I bought a $20 pulse oximeter, which measures pulse rate as well as blood oxygen. It showed resting (easy chair) pulse rates ranging from 35 to 47, with no discernible pattern in the variation. So, for now, the answer is "it varies," and we won't worry about it.
• Thyroid: Last month TSH was 7.7 mIU/L, and this month 6.6, both slightly above the reference range. I have been taking a supplement which has seemed to help bring my thyroid into the correct range, but now it seemed to be failing. After discussion Dr YLH ordered several additional thyroid function tests on blood already drawn, and those came up normal, so I guess we won't worry about it unless I experience actual symptoms of hypothyroid.
• I asked about the new Hevylite blood tests, capable of measuring the various components of the immunoglobulins in the blood with more accuracy than the currently available tests. It sounded to me like the new tests are not yet in widespread use at Mayo Clinic. In any case, I believe that the existing tests provide enough information to track my type of myeloma.

Most-Recent Test Results:

Test		Mar 06		Apr 03		May 01		May 29		Remarks
M-spike g/dL		1.1		1.1		1.0		1.1		\ Tumor marker
IgG mg/dL		1300		1270		1340		1320		/ Tumor marker
Lambda mg/dL		3.51		3.26		3.38		2.59		L free light chains
Kappa mg/dL		1.29		1.37		1.39		1.25		K free light chains
Ratio 0.26-1.65		0.37		0.42		0.41		0.48		Kappa / Lambda
Calcium mg/dL		9.3		9.7		9.9		10.1		OK
Creatinine mg/dL		1.0		1.2		1.1		1.2		Kidney, OK
HGB g/dL		14.8		15.2		14.8		16.0		Hemoglobin, fine
RBC M/uL		4.33		4.41		4.17		4.52		Red cells, OK
WBC K/uL		4.4		4.3		3.8		5.2		White cells, OK
ANC K/uL		1.9		1.9		1.9		2.6		Neutrophils, OK

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.