Whose genome is it anyway?


Debu Tripathy blog image
It may confuse most of us how our DNA, a product of nature that defines our identity and personal traits, could have been patented in the first place. Some claim that patent protection for years of hard work is needed to continue our efforts to isolate and identify genes in order to help develop diagnostic tests and therapies for the good of the general public. [Nature: Myriad ruling causes confusion]

Myriad, the gene diagnostic company that has been in the cross hairs of the recent Supreme Court to invalidate key portions of their patent on the breast and ovarian susceptibility genes BRCA1 and 2, should be credited for their diligent work. They have helped thousands of patients know their cancer risk and act accordingly, and have allowed the medical community to better understand which mutations are actually harmful – something that requires access to large amounts of pooled information.

However, the prices commanded for testing no longer reflect the state of the art of gene sequencing that has dropped precipitously with newer "next generation" sequencing technology. [CURE: Can a Human Gene Be Patented?] Furthermore, the discovery of the BRCA genes were not made in isolation but rather grew out of earlier work to pinpoint the general location of these genes dating back nearly two decades earlier.

Nimble and efficient gene diagnostic companies are popping up like Internet start-up companies of the 1990s. Their day has now arrived as they find new freedom to operate.

The Supreme Court's decision is not fully sweeping and its effects will not be seen overnight [New York Times: Justices, 9-0, Bar Patenting Human Genes]. Larger companies like Myriad still retain significant intellectual property and will probably switch over to offering more complex gene panels tests and tissue assays that go beyond the effect of single gene mutation, but rather the biological impact on tissues. This too, will move the field forward. But will competition in the free market lower prices of testing at the cost of reciprocal stifling of investment and innovation? Only time will tell, but history seems to be on the side of healthy completion equaling continual improvements in both quality and value in most other areas.

We hope the same will pertain to the matter of our genes.


Cost of care varies from place to place


I am beginning to feel like I used to when my dad would say, "Shop around" before I got my car fixed. I am being facetious, but the new reports on the varying costs for procedures coming from hospitals reminds me of the day I asked my plastic surgeon how much a procedure cost, and his reply was, "You have insurance don't you."

That's not the point, but let me back up.

For those of you who have been on a desert island, the government has for the first time released data on what hospitals are charging Medicare for specific medical procedures.

You can get the gist of this by reading the New York Times article, but if you Google it you can go directly to the list of hospital charges yourself. Prepare to be stunned.

While some of the differences are bound to be clerical and the distinction between what one hospital includes in a defined service compared to another, it's fairly clear we have some significant discrepancies here, and we are all being hurt by them. You can see where they biggest costs accumulate with an excellent map created by National Public Radio that has the South looking rather greedy.

Medicare is under the gun. My last blog had to do with cuts to cancer clinics that are sending cancer patients on Medicare to hospitals for treatment. These hospitals may be hundreds of miles from the patients' homes and require that they acclimate to all kinds of new procedures and people that require difficult, confusing and stressful transitions. For those clinics that try to hang on to their patients, the cuts will be made in support staff and other overhead.

What galls me the most about this whole cost structure issue remains the bottom line for the poor. These procedure costs are not just for Medicare, they are the costs for the procedure, and they are also billed to insurance companies who can negotiate a lower rate based on the fact that they are insurance companies and that is how they operate. So insurance companies speak for the insured and Medicare speaks for the elderly and in some instances Medicaid speaks for the destitute.

The people who get hit with the whole bill are the hard working lower middle class who don't have insurance and aren't poor enough to get Medicaid.

We already know that anyone who gets cancer, insured or not, will probably declare bankruptcy. Yes, your read right, with insurance. If your insurance pays 80 percent that still leaves 20 percent for those without really good insurance. Add up 20 percent of $300,000 for two years and you have massive debt, and that does not account for loss of income and all the personal expense that goes into a cancer diagnosis.

I really don't know where to go from here – except England. Oh, except I don't believe in socialized medicine either.


Sequester and cancer


Kathy LaTour blog image

For most of us the "sequester" has just been a weird word that meant small airports were going to have to shut down because of less federal money to keep them open.

But for those of us in the cancer community, the sequester is now emerging as something that will impact us in a number of ways -- some immediate and some long term.

Last week I heard a story on NPR about less money being granted for research by NCI and other funding agencies in Washington because of the sequester. They interviewed a young cancer researcher who spent most of her time trying to find funds to set up her lab. She had been unsuccessful, and by the end of the interview said she was considering looking into other areas for a career.

Folks this is the brain trust that will find the cure for us – and they can't get the money to do their work. Score one for Sequester – 0 for cancer.

Now it's cancer treatment for our Medicare patients who are being cut off due to the sequester. To follow the impact of the sequester and Obamacare in general, read the Washington Post blog by Sarah Kliff. One of her latest blogs, which you can see her discuss here in a video blog, pointed out that the small clinics around the country that take Medicare patients are having to turn them away because of the Medicare cuts required by the sequester.

Right now the oncologists who administer expensive chemotherapy drugs, and many are very expensive, are reimbursed by Medicare plus 6 percent for storage and all the costs associated with giving the drug. The cost of the drug isn't going down, so it's the associated costs that are being cut.

These are costs associated with running the clinic and hiring staff called nurses. The critical part of cancer care we have been fighting in the cancer community for more of not fewer. The answer found by the clinics is to turn the patients away and tell them to go to hospitals for treatment, which ultimately will be more expensive, and, by my way of thinking, less personal than their clinic setting.

Indeed, a study done by Millman found Medicare patients ended up with an average of $650 more in out-of-pocket costs when they were seen only in a hospital. And for rural cancer patients, traveling to a larger cancer center may mean significant travel they can neither afford nor endure.

One report even had Rush Limbaugh eating his words. When he announced that the so called cuts to Medicare were, in fact, inaccurate and that Medicare was protected, one of his own followers, a conservative oncologist called in and explained that, actually, Medicare cuts were causing Medicare patients to be sent to other locations or to be turned away.

What does all this mean. Medicare is supposedly one of our protected rights. We worked for it, but it's looking more and more like it will be gone by the time many of us get a chance to use it -- and if we can there won't be any doctors left who take it. And as for those who have the misfortune to be diagnosed with cancer while on Medicare, well, . . .


Kiss your nurse day


Kathy LaTour blog image

Washington DC has become the City of Angels this week as more than 3,500 oncology nurses have gathered to attend the Oncology Nursing Society's 38th Annual Congress. CURE is present to confer our Extraordinary Healer award on one oncology nurse nominated by you, our readers.

This is the 7th year we have had the event and last night there was standing room only when some 750 nurses gathered in the ballroom of the Washington Convention Center to hear the three finalists read their essays before we awarded the top prize and an all expenses paid spa weekend in the Austin Hill Country.

Our mistress of ceremonies, actress Marlee Maitlin, was the youngest actress to win an Academy Aaward for Children of a Lesser God. It was mesmerizing to watch her sign her presentation while her interpreter, Jack Jason, spoke about her family's struggles with cancer and her feelings that, like deafness, cancer does not define a person.

This was the first year we didn't have all three essayists there to read their essay. In fact we had two who were seen on video.

Julie Hinson, RN, BSN, OCN, a nurse from the Gynecologic Oncology department at the Salem Cancer Institute at Salem Hospital in Salem, Oregon, was nominated by her patient Joyce Lowry. Lowry teaches in Okinawa, Japan, and couldn't travel to be with us.

Another essayist, Anne Ott of Metairie, Louisiana, stayed with her husband in the transplant unit of M.D. Anderson Cancer Center in Houston. She also delivered her essay about nurse Angela Krach on video and was represented by her parents John and Margaret Falgoust at the event.

The third finalist was Steven Cuzzilla, RN, ADN, from the Myelosuppression Bone Marrow Transplant Unit at Vanderbilt University Medical Center in Nashville, Tennessee. He was nominated by Cassie Jones of Ingleside, Texas.

Each of these nurses went above and beyond in their nursing careers for their patients -- from the mounds of forms needed by Lowry to travel back and forth when she learned she had had a recurrence of her cancer to Cuzzilla, who changed his career to oncology nursing after losing his wife to melanoma so touched was he by the loving care they received while she battled her cancer.

Angela Krach, RN, BSN was instrumental in helping Ann and her fiancé James get married in the chapel at M.D. Anderson. The couple was putting the finishing touches on their wedding for last summer when James was diagnosed and they picked up their lives and moved them to Houston from Metarie.

The event was made possible by sponsorship from Amgen Oncology and Millennium: The Takeda Oncology Company.

When Angela Krach was announced the winner, it was time to celebrate oncology nursing and the strength of these amazing women and men who have come this week to learn how to be there for us in our hour of need.

So if you haven't thanked your oncology nurse today, you might want to give him or her a call.


Understanding the Affordable Care Act


Kathy LaTour blog image

We are all looking forward to the Affordable Care Act. At the same time, we are hoping that someone will be around to tell us how it relates to us. Let's face it. The administration didn't do a very good job of selling it or explaining it. Each of us is figuring out how it will apply to us as small issues surface.

We know that our kids can stay insured until 26, and we know as cancer survivors that our history can't be used against us.

Today there was a good piece in the Kaiser Health News feed that is available through email sign up. There are a number of these health care feeds available, and to be a knowledgeable consumer, I recommend you find them and sign up. Today they focused on screening tests for colon and rectal cancers.

Most health plans cover preventive health services if it's one of those recommended by the U.S. Preventive Services Task Force, and since colorectal cancer is the second leading cause of cancer death in the United States, it is one of those covered. Finding colon cancer early is the key to survival and that means removing polyps discovered during a colonoscopy before they turn into cancer.

The colonoscopy is one of those tests that should not cost the patient anything – unless, of course, polyps are found and removed, and that's when it gets complicated.

Because if polyps are removed to see if they are cancerous, the test can then be judged to be therapeutic or diagnostic rather than screening, and the patient can be billed for the cost – around $2,000 or more. Right now, half the people who get screening colonoscopies have polops removed.

And what about patients who have a positive fecal occult blood test before their colonoscopy? Is that colonoscopy part of the screening process or diagnostic? And what if they have a family history?

In February, according to Kaiser, the government clarified that high-risk patients who qualify for more frequent screening should not have to cost share.

Take the time to educate yourself on the specifics so you will know what you do and do not have to pay for.


Sequestration and cancer patients


Kathy LaTour blog image
From Livestrong AUSTIN, Texas – April 4, 2013 – Today, The Washington Post reported that cancer centers across the United States are turning away thousands of Medicare patients due to recent spending cuts known as "sequestration." According to The Washington Post, the two percent cuts are unexpectedly harming cancer patients because cancer drugs, which must be administered by a physician, are among the pharmaceuticals covered by Medicare Part B and therefore subject to the sequester.

The LIVESTRONG Foundation has mobilized its free cancer support services to help anyone confronting challenges getting access to drugs understand their options and advocate on their behalf to ensure that a needed treatment is not withheld. The LIVESTRONG Foundation helps people affected by cancer navigate the health care system and overcome barriers to their care. These free cancer support services offer confidential, on-one guidance dealing with the financial, emotional and practical challenges that accompany a cancer diagnosis. These highly personalized and resourceful services are available in English and Spanish online, by phone and in-person. The Foundation's trained, bilingual navigators assist patients nationwide with a wide-range of issues including insurance coverage, financial assistance and employment concerns, as well as clinical trial matching, transportation and treatment options. Since its founding 16 years ago, the Foundation has served more than 2.5 million people affected by cancer.

"No one in this great country should be turned away from life-saving cancer treatment," said Doug Ulman, LIVESTRONG Foundation President and CEO. "We stand ready to serve any person in the U.S. affected by cancer, through our comprehensive, free services that help cancer survivors and their families cope with the financial, emotional and practical challenges that accompany a diagnosis."

LIVESTRONG Foundation navigators, in partnership with the Patient Advocate Foundation, EmergingMed, Imerman Angels and the Navigate Cancer Foundation, are available to help with:

• Emotional Support: Assistance coping with a cancer diagnosis, help accessing support groups, as well as peer-to-peer connections;

• Fertility Risks and Preservation Options: Information on fertility risks and help accessing discounted rates for fertility preservation options;

• Insurance, Employment and Financial Concerns: Information on employment rights and benefits, financial assistance and debt management, including insurance and billing issues as well as medication co-pay assistance; and

• Treatment Concerns: General cancer and treatment information, and matching to clinical trials.

• Access to Care: residents of Central Texas can receive free rides to and from cancer-related medical appointments through the Foundation's transportation program

People affected by cancer can access the Foundation's free cancer support services the following ways:

• By phone: (855) 220-7777 (English & Spanish)

• Online: (English) or (Spanish).

• In person: LIVESTRONG Cancer Navigation Center, Address: 2201 East Sixth Street, Austin, Texas 78702

• To schedule an appointment, email or call (512) 220-7777.

• For more information, visit


We need cures, not cuts in cancer research


suzanne lindley blog image
I have a thirst for wanting to accelerate medical research; a personal plea for more advances and greater funding that is instead threatened with huge cuts. When the drip of my chemo began 14 years ago I didn't think about the hard work, dedication and science that was behind my treatment or how many drips it would take to bring about a cure. I knew only that this scary concoction might prolong my life.

As new treatments were developed, I benefited but still didn't realize what was needed to get even one new treatment to my infusion room. I assumed that there would always be a treatment. I thought that there would be an easy fix. I know better now. For without research, I wouldn't be here today enjoying and harnessing the power of everyday life; creating extraordinary milestones out of ordinary moments.

I woke up this morning to what would have once been a normal day; a day pre-cancer that most likely would have been taken for granted. It is the everyday experiences provided to me through research that now bring me great joy. I listened to Chloe's steady breath, snuggled next to me after having made an appearance in the middle of the night. I let her sleep late while I, too, took in a few more minutes of rest. Today will be filled with everyday stuff and precious moments that interlace colorful life threads ... a lazy morning with my pre-schooler, lunch with Katie, texts with Karlie and dinner on the table when Ronnie gets home. ...finger painting, "Fancy Nancy," a quiet walk to the lake, a picnic and the grand feeding of the two resident ducks.

Spring is here and new life is budding on the trees. The season is awakening and I feel that I am, too.

Fourteen years feels like a breath, and like forever all at once. These years have been abundant with colorectal cancer research. Research that saved my life.

Tomorrow is chemo day. From the I.V. bag, slowly into the tubing and steadily into my veins I will watch the drip, drip, drip of research that will bring me even more time. I will be grateful that there are still treatments to receive. These treatments, procedures and clinical trials made possible because of cancer research have given me hope.

Twenty-eight million other Americans are counting on further cancer research to give them hope, too, but budget cuts at the National Institutes of Health (NIH) threaten those hopes and our lives. These cuts won't just affect those of us with cancer but will impede the research for every disease from Alzheimer's to Zellweger Syndrome (A to Z).

Your voice makes a difference. Join Rally for Medical Research and "unite with millions of Americans across the country to call on our nation's policymakers to make life-saving medical research funding a national priority. This unified call to action will raise awareness about the critical need for a sustained investment in the NIH to improve health, spur more progress, inspire more hope and save more lives. Visit Rally for Medical Research to get involved!

We need cures, not cuts!


LIVESTRONG says they are living strong


Kathy LaTour blog image
On Thursday Doug Ullman, the president and CEO of the LIVESTRONG Foundation, was to have delivered the state of the foundation report to the gathering of more than 500 leaders, partners, grantees and advocates from around the United States and the world who had gathered in Chicago.

Instead, operations executive VP Andy Miller took to the stage and said that, as cancer survivors we are used to adjusting when things don't go as planned, and as Ullman was stuck in the weather somewhere, he would be presenting the state of the Foundation. No matter who delivered the message, it was clear: The foundation is strong and it's not going anywhere.

Miller didn't ignore the elephant in the room, conceding that the admission by Lance Armstrong that he doped was a shock and disappointment to everyone. But he said that Lance did the right thing distancing himself from the Foundation so it can continue with its mission to help every cancer patient and survivor live every moment of every day of his or her life.

OK, enough about Lance and, no matter how you feel about Lance, get over it. The LIVESTRONG Foundation is moving on without him to keep offering myriad services and support to cancer patients and survivors around the country.

Miller also unveiled the new Logo for LIVESTRONG – a double bar, the top one the ubiquitous yellow with black lettering that says LIVESTRONG and then the second, a black bar below that extends past the top bar that says Foundation.

Reading from Ullman's prepared remarks, Miller said that the Foundation will celebrate LIVESTONG day on May 17th, moving it to the day the yellow wristbands were introduced nine years ago and away from the former day that Armstrong won his first Tour de France.

He also said the foundation's 2013 call to action would involve working on the medical community to include all phases of the cancer journey into their care.

The Foundation has been a primary source of support for research into survivorship issues by creating the LIVESTRONG Survivorship Centers of Excellence around the country. The reality is that nothing will ever change in how cancer survivors are treated until there is research behind it.

In talking to Ruth Rechis, the director of research and evaluation, she reiterated that the foundation focuses on determining what people going through cancer need and finding ways to provide it. They have been surveying the patient community through their navigation hotline as well as holding meetings to bring together thought leaders in survivorship about what essential elements should be included in survivorship programs.

From their home base in Austin, Texas, LIVESTRONG's navigation program offers phone support from 9 a.m. to 5 p.m. daily. Reichs says they are now exploring ways to expand the navigation model with needs assessments in other communities.


Kadcyla (T-DM1) approved to treat HER2+ breast cancer


Today, Kadcyla (ado-trastuzumab emtansine, or T-DM1) received a long-awaited approval from the Food and Drug Administration (FDA) to treat patients with metastatic, HER2-positive breast cancer who have previously been treated with Herceptin (trastuzumab) or taxanes, a class of drugs that includes paclitaxel and docetaxel.

Kadcyla belongs to a new class of drugs called antibody-drug conjugates and works by fusing the powerful chemotherapy drug emtansine to the antibody Herceptin, which targets HER2 receptors on cancer cells.

The approval was based on results from the phase 3 EMILIA trial, which enrolled 991 patients who had previously been treated with Herceptin and a taxane-based chemotherapy. Patients were randomly assigned to either receive Kadcyla, or the current standard--a combination of Xeloda (capecitabine) and lapatinib. Those in the Kadcyla arm had a median overall survival of 30.9 months compared with 25.1 months for those in the combination arm. Patients receiving Kadcyla also had improved median progression-free survival: 9.6 months compared with 6.4. Furthermore, patients on Kadcyla experienced fewer severe side effects (grade 3 or higher) than those on Xeloda and lapatinib (43.1 percent compared with 59.2 percent).

Common side effects included low platelet count, nausea, fatigue and joint or muscle pain. This drug also carries a boxed warning (the highest warning the FDA can give) advising doctors and patients that in some instances, this drug can cause liver toxicity, heart toxicity and death. It can also lead to severe birth defects.

The drug is expected to be available within two weeks, and the estimated cost will be $9,800 a month, or $94,000 for a course of treatment. Genentech, the drug's manufacturer, is planning to begin patient assistance programs to help patients that might not be able to afford Kadcyla.

For more information on Kadcyla, visit or call 877-436-3683 . And for more information on treating HER2 breast cancer, read our web-exclusive article here.


Pomalyst approved to treat multiple myeloma


The Food and Drug Administration approved Pomalyst (pomalidomide) on Feb. 8 to treat patients with multiple myeloma who have progressed during or within 60 days after receiving at least two therapies, such as Revlimid (lenalidomide) or Velcade (bortezomib).

Pomalyst is a derivative of Thalomid (thalidomide), another drug used to treat multiple myeloma and in the same family of drugs as Revlimid. Called immunomodulating agents, these drugs incite the immune system to attack the myeloma cells.

The approval is based on a phase 2 clinical trial in which patients received either Pomalyst and low-dose dexemethasone, a type of steroid, or Pomalyst alone. In those on Pomalyst alone, 7.4 percent had their cancer completely or partially disappear compared with 29.2 percent for those receiving the combination. This response lasted for more than 7 months in the combination arm.

Pomalyst also performed well in a phase 3 clinical trial in which patients received either Pomalyst and low-dose dexemethasone, a type of steroid, or high-dose dexemethasone alone. Those in the Pomalyst combination arm lived 7.7 weeks longer without their disease progressing than those on the steroid alone. The median for overall survival had not yet been reached for those receiving Pomalyst when the data were presented at the American Society of Hematology annual meeting in December.

Common side effects included low white and red blood cell counts, fever and infections. The drug also includes a boxed warning (the highest warning the FDA can give) that pregnant women should not take the drug as it causes serious side effects, such as blood clots and birth defects. Therefore, prescribing physicians must be certified with the Pomalyst Risk Evaluation and Management Strategy (REMS) program.

For more information, visit or call 800-931-8691.


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