Monday, October 31, 2011

Oral Cancer Drug Parity

Many of us have discovered that oral drugs that we take at home, like Revlimid or Thalidomide, can cost us much more than intravenous (IV) drugs, like Velcade, delivered in the doctor's office or a clinic. There are various reasons for the difference, including deductibles, co-pays, annual or lifetime maximums, and the "donut hole." The costs can be so staggering that many patients simply don't fill their prescriptions.

So why not just use IV chemotherapy instead of oral meds? (1) For some patients, oral meds may very well be the best medical treatment, especially with the newest oral meds; (2) It is SO much more convenient for the patient (us) to take a pill once a day instead of sitting in a clinic for an infusion. We can work, and travel, and live fuller lives, without being tied to a clinic; (3) For some patients, the nearest clinic may be many miles away; and (4) In some cases the oral drug may cost the health care system less, considering the much higher number of office visits required for IV therapy.

Fourteen states have now enacted laws requiring insurers to cover oral drugs on terms as favorable as they cover IV drugs. HR 2746, the Cancer Coverage Parity Act of 2011, is intended to fix the problem at the federal level, eliminating the need for the remaining states to enact their own legislation.

After running the Marine Corps Marathon yesterday, I stayed in Washington to help the International Myeloma Foundation (IMF) and the Leukemia and Lymphoma Society (LLS) bring this issue to the attention of a few congressmen and senators. Today we visited:
  • John Martin, Legislative Director for Congressman Phil Roe, MD (R-TN);
  • Paul N. Balzano, Legislative Director for Congressman K. Michael Conaway (R-TX);
  • Caira Woods, Legislative Health Fellow for Congressman Frank Pallone, Jr. (D-NJ);
  • Pat Pelletier, Legislative Correspondent for Congressman John Kline (R-MN); and
  • Elizabeth Hoffman, Legislative Assistant for Congressman John R. Carter (R-TX)
I've never done anything like this before, and was actually more apprehensive about these meetings than I was about Sunday's marathon - I didn't sleep well last night. But I found that I liked it, especially after the first person was warm and affirming. Everyone was cordial, at the very least. In most cases, the issue was new to the staff person with whom we spoke. They were there to be educated and they learned something. I enjoyed it and will sleep well tonight!

Tomorrow we have six more meetings. I believe five are with congressional staff, and hopefully one with an actual senator. Can't wait.

Monday, October 24, 2011

Article in Minneapolis Star Tribune

Here's a nice article in the Minneapolis Star Tribune's East Metro Section about my marathons and Team Continuum, published yesterday. StarTribune story

Team Continuum helps families that are devastated by the costs and disruptions of cancer.

You can help, using someone else's money! If you have a Fecebook account and go to my E-Race Cancer Facebook Page and "like" it, a donation will be made to Team Continuum by a generous third party. We invite you to do that - there is no cost to you.

Of course you are certainly also welcome to go directly to my Team Continuum page and make a further contribution to the cause. It's deductible.

Thank you!

Thursday, October 20, 2011

Not Good News Today

I've participated in a study of a new drug called pomalidomide (originally called CC-4047) for 47 cycles now, each 28 days long. It's been a wonderful ride so far, with the cancer held stable for more than 3 1/2 years. Eventually every treatment fails, however, and when that happens I will see the cancer markers starting to increase.

They increased today. The blood test results at Mayo Clinic showed a 28% rise in immunoglobulin G (IgG), from 1020 to 1310 mg/dL, which is the largest jump in IgG since I started in the study. The monoclonal (naughty) component of immunoglobulin G is called M-Spike, and it increased too, though more modestly, from 1.0 to 1.1 g/dL. The results do go up and down, of course, for perfectly natural reasons, and they most likely will go down again next month. Or, they could continue on upward. Meanwhile, I'll be on pins and needles.

What if they do keep going up? There are several other treatments that my myeloma hasn't yet had a chance to outgrow, and some of them will undoubtedly help.

Better news: Calcium, kidney function, hemoglobin, and white counts are all within normal limits. I think that means that the myeloma most likely isn't hurting me yet.

Some Current Test Results:

Test    Jul 28    Aug 25    Sep 22    Oct 19     Remarks
M-spike g/dL 1.0 1.1 1.0 1.1 \ Tumor marker up
IgG mg/dL 1030 1150 1020 1310 / Tumor marker up
Lambda mg/dL 2.21 2.25 2.49 2.75 L Free light chains
Calcium mg/dL 9.8 10.5 10.0 10.0 OK
Creatinine mg/dL 1.3 1.1 0.9 1.1 Kidney, OK
HGB g/dL 15.1 14.7 14.9 14.6 Hemoglobin, OK
RBC M/uL 4.17 4.08 4.09 4.07 Red cells, low
WBC K/uL 5.1 3.8 6.2 4.8 White cells, normal
ANC K/uL 1.90 1.40 2.60 2.30 Neutrophils, normal

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.

Prepared by Sunshine on the road between Hartford and St Paul: Applegate organic chicken/turkey fire-roasted red pepper sausage, organic mustard, tuna dish (organic peas, tuna, organic brown rice), veggie dish (organic squash, organic sweet potatoes, onions), avocado: