For the Cure to a broken heart

BY KATHY LATOUR | FEBRUARY 3, 2012

First a recap. For the past four days we have been bombarded with information about the decision by Susan G. Komen for the Cure to remove funding from 18 Planned Parenthood sites, using the reasoning that they don't fund any organization under investigation. Well, within about 12hours it became clear that the decision came straight from the office of Karen Handel the new Komen Vice President of Policy and a former Georgia office holder and gubernatorial candidate who is anti-abortion and has even gone so far as to say she is anti-Planned Parenthood.

Now there is enough evidence to confirm that the decision to stop funding organizations under investigation was made in December specifically to stop funding Planned Parenthood, and again it was Handel that drove the decision. Komen has been down the Planned Parenthood path a number of times in the past decade and had made what everyone thought was a final decision–-it would be funded. But that was before someone recommended Karen Handel as the best person for the job of Vice President of Policy.

That person is known in the ranks of Komen as someone who mixes a particularly powerful batch of Kool-Aid that Nancy Brinker has become addicted to.

So where are we? Komen stands by its decision, but now Nancy Brinker goes on television to say it's a policy change to give money to direct service organizations, not pass through groups, which means they want to give the money to the groups that do the mammograms and Planned Parenthood evidently doesn't do that, they must send women out and then pay for it from Komen funds. So why the switch?

Personally, I think Nancy considered what their decision would mean for poor women in Dallas who go to Parkland Hospital, which, I am fairly sure gets Komen funds for its screening program and has been under investigation for two years – and found guilty, by the way, in areas that don't pertain to screening. And no one thought about this before? Komen is in a mess and this is where the broken hearts come in.

At the first headline, I blew it off. Komen has been a target before, a lot. They are big, they raise a lot of money, and the well over 100 affiliates raise money through the Race for the Cure, 75 percent of which is kept local for their own screening, education and treatment needs. This money reaches the very poorest of the poor and the women who work tirelessly for Komen affiliates make a real and tangible difference in the lives of these women. These are the salt of the earth of the American heartland where women are proud to take care of each other and dedicate thousands of hours a year to do just that.

Speaking around the country at Komen events, I have met hundreds of Komen volunteers and I would be proud to call any of them a friend. I have never asked anyone if she was a Democrat or Republican or if she was for or against abortion.

With the 25 percent the national foundation receives they fund numerous other projects including basic research, and as a 25-year and 7-year survivor, and a woman who lost her mother to breast cancer, I count on research to be sure my daughter doesn't have to face this disease, and if she does, she lives through it.

I have been president of the board of two nonprofits funded by Komen, one, the Bridge Network, provides direct support to women diagnosed with breast cancer who have no insurance. The other was Gilda's Club North Texas, now Cancer Support Community. These programs would have had a much harder time without Komen.

But what has really broken my heart this week is talking to the women who built the foundation, some of whom spent upwards of 20 years committed to this cause. The woman who created the policy office at Komen, a survivor herself, spent endless hours in the halls of Congress during her 10-year tenure, which ended in 2008. She worked both sides of the aisle to overcome any idea that Komen was politically driven. She also convinced the leaders of our country that this organization was about more than pink ribbons, it was about the power of the vote. She organized advocacy groups before we understood what advocacy was about. For 10 years she grew the office, only to watch the newest occupant, who has been with Komen nine months, bring it down in two days.

These were strong women who wouldn't take no for an answer, just the way Nancy Brinker wouldn't when she started the organization as a promise to her sister. There are some of the "old guard" left, women who took Komen to the heights in the nonprofit world to make it what it was on Monday of this week: An organization committed to ending breast cancer that was built on integrity and very decidedly non political – because breast cancer doesn't care what you believe, it is an equal opportunity killer. There is no place for politics at Komen.

There are many of us who fear that Komen will not be able to recover from this in part because of the way it has been handled. If I had been Karen Handel, I would have offered my resignation immediately, and I was hoping she would have the honor to do that. Then I saw the retweet she posted, "Just like pro-abortion group to turn cancer orgs decision into a political bomb to throw. Cry me a freaking river" and feared the worse. This woman has no grace, no courage and an ego that doesn't care if she brings down in nine months what it took others 30 years to build.

Resign Karen. You owe it to a lot of people.

1:27 p.m. Nancy Brinker has made a statement that includes the following

"We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligiblity to apply for future grants," Nancy G. Brinker, the agency's ambassador, said in a statement.

So Handel is still there and to shut down the firestorm, PP can apply. This does not mean they will be funded.

• Dating Teleconference Today
• Make a difference
• An update on the Cancer Genome Atlas for breast cancer
• Video blog: Test could spare some DCIS patients from radiation
• Video blog: HER2-targeted agents

Erin Kramp's Legacy

BY KATHY LATOUR | MAY 19, 2011

When I heard that Oprah was talking to Peyton Kramp as a part of reliving her favorite shows, it took me back a few years. I remember talking with Erin Kramp, Peyton's mother, a few months before she died of breast cancer in 1998. One of my students at SMU was assisting her with her book and other writing chores at her home not far from the campus and had made an introduction for me.

Erin and her husband Doug had already been featured on Oprah where Erin talked about the hours upon hours of video tapes she had made for Peyton. The tapes were filled with the kind of advice only a mother can give, but – more than that – they were filled with Erin and her amazing, light-filled personality. My desire to talk to Erin came from our shared experience of being young mothers with breast cancer, and the fact that she was living out my worst fear -- that I would die and not be here to raise my child. My daughter Kirtley was a year old when I was diagnosed with breast cancer in 1986, and Erin's daughter Peyton was 2 when Erin was diagnosed in 1994. I had spent many sleepless nights wondering how I could leave a legacy for my daughter should my cancer become terminal. Erin was doing just that. But how could she face it emotionally? I wanted to know this woman.

Erin and I talked a few times, and I like to think that she thought of me as someone who understood not only her pain but also her determination to leave a legacy for Peyton. She told me that she had already outlived her prognosis by a year and was able to see Peyton reach many of the milestones that occur at 5 and 6.

What I remember most is how her faith was evident in everything she did. She firmly believed that if this was to be her path, then she would do it with grace and wisdom. By openly talking about her death, she was living in that place called hopeful reality. She knew she was going to die and she had faced it and accepted it – but at the same time she was living every day to the fullest and working hard to find ways to extend her life as long as possible. It's a difficult place to live, but Erin had embraced it with the same kind of determination she had lived her life.

During my time as a breast cancer survivor I have lost many friends to this disease. Each has been a different kind of loss but the most memorable were those who found the same peace Erin did in a resolved death. When you experience such a death it provides a clear picture of how we should all live and die. I liken it to moving into the valley of the shadow of death and getting comfortable, hanging curtains, seeing friends and knowing that the reality is that everyone lives here – they just don't know it.

Erin didn't just leave a legacy for Peyton, she left one for all of us.

• Why regulation matters ... but also flexibility
• For the Cure to a broken heart
• Two new drugs approved, one pulled from the pipeline
• Drug approved specifically for treating myelofibrosis
• Erbitux Approved for Metastatic Head and Neck Cancers

A night to remember

BY KATHY LATOUR | MAY 2, 2011

This year's Extraordinary Healer award event at the Oncology Nursing Society meeting in Boston was the best yet. Of course, I say that every year while still in the energy of the event. The room was filled with nurses, and, while the finally tally has yet to come in, we had 850 RSVP.

When each of the essayists read her words with her nurse standing beside her, it was hard not to get emotional. Our winner, Marie Hayek from Columbus, Texas, couldn't have been more surprised. Martha Hastedt, who nominated Hayek, wasn't surprised. She had been telling Marie to get ready to go to Boston, so sure was she that Marie's commitment to her oncology patients would win.

Every year without fail, the winning nurse protests that the others were so much more worthy than she, and this year was no exception.

I got to spend time with the finalists and the families and friends they brought to the event. Finalist Corinne Gray was accompanied by a very special friend named Cathy who, we found out, also lost her husband to cancer around the same time Corinne did. Robert Martinez was also her husband's nurse, and the women decided together that they would nominate him. They focused on Corinne's story but worked on the essay together. Martinez was the nominee who became an oncology nurse after retiring from Verizon after 30 years. He came to the event with his daughter Tomasita, who is also an oncology nurse.

Mistress of Ceremonies Cyntian Nixon of Sex and the City fame chose sections from each of the essays for her talk. She also talked about all the people surrounding Sex and the City who had struggled with cancer, including Evan Handler, who played the role of Charlotte's husband. The show's writers were moved to add a story line about breast cancer in the series after so many of the show's writers dealt with cancer.

Nixon was great, standing for pictures with nurses for 45 minutes before having to rush to her New York-bound train. The nurses clearly loved Nixon, with more than one squealing with delight as the shutter snapped.

It was a remarkable evening.

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• An introduction to cancer: From a father and his daughter
• The cushion of silence

Cancer, the Environment and the EPA

BY KATHY LATOUR | APRIL 13, 2011

This week I have been researching a story that will appear in the winter issue of CURE on the environmental connections to cancer. Just as I am reading the 2008-2009 Reducing Environmental Cancer Risk from the president's cancer panel, we are hearing that the EPA is going to take one of the biggest hits in the new budget cuts. Interesting.

In its report from 2009, the President's Cancer Panel blasted the regulation of environmental contaminants, enumerating what it defined as the key issues (read barriers) in more effective regulation of environmental contaminants. It began with "inadequate funding and insufficient staffing." While this was not directly aimed at the EPA, the majority of the recommendations the panel makes fall at the feet of the EPA. Number 2 is fragmented and overlapping authorities coupled with uneven and decentralized enforcement. Number 3 is excessive regulatory complexity and 4, weak laws and regulations.

But number 5 sums it up for me, and seems to impact the others 4: Undue industry influence.

The republicans have made it clear they want less regulation because it's good for business. It sure is. The cancer business is booming.

Granted, the recommendations the panel puts forth bring in lots more agencies than the EPA, among them OSHA, USDA, National Institute of Environmental Health Services, the Department of Defense (since the military has a huge amount of contaminants it clearly isn't managing well).

I remember when the panel released its report back in 2009 and the small splash it made when they reported, "the true burden of environmentally induced cancer has been grossly underestimated." Within a few days the furor had died down except for those whose lives have been forever altered by cancer – particularly those whose children have faced cancer.

Children, the panel reports, are extremely vulnerable to carcinogens. Here is one passage from the report that hit me, a mother and cancer survivor, really hard.

"While all Americans now carry many foreign chemicals in their bodies, women often have higher levels of many toxic and hormone-disrupting substances than do men. Some of these chemicals have been found in maternal blood, placental tissue, and breast milk samples from pregnant women and mothers who recently gave birth. Thus, chemical contaminants are being passed on to the next generation, both prenatally and during breastfeeding. . . children of all ages are considerably more vulnerable than adults to increased cancer risk and other adverse effects from virtually all harmful environmental exposures. In addition, some toxics (sic) have adverse effects not only on those exposed directly (including in utero), but on the offspring of exposed individuals."

So we are already behind Europe in identifying carcinogens and banning them before they hit the market, what the panel called reactionary response instead of proactive. In other words, not until someone gets sick do we look at the potential carcinogens, and then there is little movement to ban the drugs because to do so would be "bad for business."

• Why regulation matters ... but also flexibility
• For the Cure to a broken heart
• Two new drugs approved, one pulled from the pipeline
• Drug approved specifically for treating myelofibrosis
• Erbitux Approved for Metastatic Head and Neck Cancers

Death panels, advance directives and end of life

BY KATHY LATOUR | JANUARY 6, 2011

OK. This whole issue of talking about dying with your doctor becoming some kind of death panel has gone from ludicrous to bizarre.

Here are the details. Addressing end-of-life planning with health care professionals – and having insurance pay for it - was enacted by Medicare beginning January 1 of this year. This is what it says:

Voluntary advance care planning means, for purposes of this section, verbal or written information regarding the following areas: (i) An individual's ability to prepare an advance directive in the case where an injury or illness causes the individual to be unable to make health care decisions. (ii) whether or not the physician is willing to follow the individual's wishes as expressed in an advance directive

This language was supposed to be part of the original health care act. But some folks jumped on it as a way to kill off granny, and it was dropped like a hot potato.

On Sunday The New York Times reported on the new Medicare funding, saying it would "pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life sustaining treatment." I like the NYT, but I object to the the way that sentence reads because it sounds like doctors will get paid if they convince patients to die, which is not the case at all.

The whole idea is to pay health care professionals for their time to have discussions about end-of-life care. (But calling it end-of-life planning is evidently the problem, so now we'll call it advance care planning.

The story went on to quote Elizabeth D. Wickham, executive director of LifeTree, which describes itself as a "pro-life Christian educational ministry." I don't know where they dug her up, but she goes on to say that end-of-life counseling would encourage patients to forgo or curtail care, thus hastening death and that "patients will lose the ability to control treatment at the end of life."

I don't know how we got from discussing end-of-life care to losing the ability to control how we die, but that is so backwards it makes me laugh.

Folks, I have had an advance directive that deals with my end-of-life choices for a number of years. An advance directive is simply a document that gives the person more control over how he or she will die -- not less. Through this document, I have told my doctors that I do not want to be kept alive on machines, do not want a feeding tube inserted in the event I am in a coma, and do not want heroic measures taken if I cannot make a decision for myself.

Through this document I have taken the responsibility for those decisions off my child. And get this: If doctors don't have an advance directive about what patients want, they are required to do everything they can to keep them alive. If the patient has no family, that means they could spend years on a ventilator until they die. If they have family who will make that decision, it often means days or weeks of agonizing, lengthy (read costly) discussion until they can get the whole family to agree on the next move.

I have chosen what I do and don't want for the end of my life.

And as to those nasty doctors making people stop treatment and die, right now cancer patients are stopping treatment because they can't afford it, according to the Kaiser Family Foundation. So why don't we look at the cost of health care -- that's the real death panel.

And unless you have figured out a way to beat death -- no matter your age -- you might want to have an advance directive to control how you die.

• Why regulation matters ... but also flexibility
• For the Cure to a broken heart
• Two new drugs approved, one pulled from the pipeline
• Drug approved specifically for treating myelofibrosis
• Erbitux Approved for Metastatic Head and Neck Cancers

Komen for the Cure & Breast Cancer Action

BY KATHY LATOUR | OCTOBER 27, 2010

One of the most distressing aspects of October for me is that it seems to bring out the worst in some of the organizations that work toward the elimination of this disease. This week on National Public Radio, I heard the latest rant by Barbara Brenner against Susan G. Komen for the Cure. Brenner bashing Komen is old hat and we've all heard it, but this year it got to me on a new level -- as a journalist and someone who has taught nonprofit management and sat on many boards of directors.

Brenner is the Executive Director of Breast Cancer Action, whose self defined goal is to be the watchdog of the breast cancer movement. Their page-long mission statement has very commendable goals to look at environmental causes and disparities in breast cancer.

But a group that sets itself up as a watchdog should do their homework before attacking other organizations as Brenner did on NPR. The interview by Jackie Lyden allowed Brenner to launch into her anti-pink ribbon diatribe against Komen and the use of the money it raises.

It's not that she attacked Komen that's the problem since this is a country where free speech is encouraged, it's that she doesn't have her facts straight and, once again (as she has since 2004) her complaints are very general, very misleading, and, quite frankly, don't make a lot of sense.

Let's look at exactly what she said, which you can confirm by listening to the interview yourself by clicking on the link above. First, she says that Komen paints "too pretty a picture" of where we are with breast cancer."

OK, so some women don't want to be associated with a pink ribbon. That's fine, but thousands of women do, myself included. As a 24-year and a 3-year breast cancer survivor, I am proud to wear a pink ribbon to show solidarity with the other women in the world who have faced this disease. I keep one on my car, and I have had more than one stoplight conversation with a newly diagnosed woman. But if that's not your bag, fine. Just don't tell me what to do.

But what is the pretty picture she's talking about--the fact that Komen mobilizes tens of thousands of women across the country and the world to be educated about cancer is a pretty picture? What is she talking about?

Then she said that "when companies put a pink ribbon on a product, we are in trouble." Lyden finally followed up with a question on that one, asking her why. Brenner's response is that they don't do anything for breast cancer and some products are bad for our health.

Let me address the first part of that. Cause related marketing is big business. Companies know from studies that if there are two products that are the same, women will buy the one involved in doing good works in the community. So for the company, it's marketing. What it does for breast cancer for the many groups that use cause marketing is pay the bills of the organization so the funds raised can go to programming.

Here are some facts about Komen and the money they raise.

The 127 races that are held by Komen affiliates around the world raise a lot of money--yes. And 75 percent of those funds stay in the community where they were raised to be used on all kinds of breast cancer related needs. Each affiliate sets its own guidelines, but they award grants in their area to non-profits, including hospitals, that provide such services as screening, diagnostics, and treatment as well as programs to educate and raise awareness. Some fund services such as expenses for survivors like transportation to treatment.

In the '90s I was founding president of the board of two nonprofits in Dallas that addressed breast cancer. The first, a group called the Bridge Breast Network, assists uninsured women with diagnosis and treatment. We started the group with funding from memorials for my mother, who died of breast cancer in 1992, and then we had the very arduous task of fund raising for a start up that provided medical care for women with breast cancer.

Had it not been for the Dallas Affiliate of Komen, we would never have gotten off the ground. And the women we served--all of whom did not have insurance and many of whom were minority--would not have had treatment. When we started Gilda's Club North Texas, the funding also came, albeit at lower amounts because we had to prove the numbers of our members that were breast cancer survivors. Komen affiliates do their homework on every grant.

The other 25 percent of the money raised by the Komen affiliates goes back to Komen National and is directed to research – all of it. So where does the money come from to run the organization: corporate sponsors.

The second part of Brenner's comment insinuated that Komen partners with beauty products and alcohol companies – which it doesn't. To see every partner Komen has at every level you only have to go to the sponsors page on their website. Yes, occassionally, a well meaning affiliate will partner with a local company not in keeping with Komen standards,something that is addressed as soon as Komen national finds out. Think about the challenges of an organization that has hundreds of affiliates around the country in terms of consistency of message. And, as she has for years, Brenner started in on Yoplait yogurt/Komen partnership and how sending in lids is a waste of time. Maybe for her, but again, she is putting her standards on the rest of the country. I know women who have proudly collected them in their neighborhood while educating women about breast cancer. But there is more to Yoplait that, again, Brenner hasn't taken the time to research. In another part of the interview Brenner talks about Latina women and the increasing numbers being diagnosed. Well, go to this page on the Komen website and see what Yoplait is doing about that. Basically, here it is straight from their website:

Fondo Yoplait Para La Mujer Hispana (Yoplait fund for the Hispanic Woman) In 2010, Susan G. Komen for the Cure® and Yoplait are teaming up to educate and engage Hispanic communities through a special grant program for Komen Affiliates. Grants will be awarded to several Affiliates to engage new Hispanic leaders and Hispanic-serving organizations in key Affiliate activities, including governance, fundraising, communications, education, community profile, and grant making. Yoplait will donate up to $250,000 this year in support of this grant program.

But her attack on Yoplait was nothing compared to her attack on KFC and its partnership with Komen, about which she said, "nutritionists went nuts." OK, obesity is a problem and obesity has been linked to breast cancer, but to blame one fast food restaurant, which may be the only one in the community (and therefore get lots of traffic) is absurd. And what Brenner, again, failed to note was that with those pink buckets comes community awareness. It's in the contract they sign with Komen. AGAIN – from the website, and it took me about 5 minutes to find it. Our corporate partners provide us with the opportunity to reach people where they live, work, and play. In addition to a financial contribution, each of these organizations have found a unique way to get their customers and employees involved in raising awareness and hope that we will one-day find the cures. We thank them for their commitment to the fight to end breast cancer.

In other words, Komen gets it. The companies want to brand themselves as Komen friendly because Komen touches so many women (read customers), and Komen says, "yes, but this is what you have to do for breast cancer." That, my friends, is good business.

And lots of companies don't even make the cut to begin the conversation. A number of years ago I was a college professor who taught nonprofit management at Southern Methodist University in Dallas. Because Komen is based here and because it is the gold standard for cause related marketing, I always asked their marketing folks to come talk to class. Every year I heard them tell the class how many companies approached Komen hoping to be a partner and how many were summarily dismissed (Hooters, if you can believe it).

The speaker always told the class how each partner was vetted and contracted so that both sides got what they wanted from the deal. In case you think they only said no to a few, I called Komen for the latest figures. In 2009 they had 366 companies approach them wanting to partner. They accepted 76. And remember that each of those companies that was turned down was offering money. Having sat on many a nonprofit board, I know what a struggle it is to raise money and how many ethical discussions there were when we weighed the "yes, but" of taking money from someone marginal. Komen is very clear about who they will and will not work with -- and the whole committee has to agree.

Then Brenner began to attack where Komen puts its research dollars. Here is a direct quote from Brenner in the interview when Lyden asked her what she wanted from Komen.

We want them to market with less aggressiveness with companies bad for our health and tell the real story behind breast cancer.

It must be Ford, a million dollar sponsor, she is talking about when she says companies "bad for our health." You know a lot of people are killed in car accidents each year, and I am sure a percentage of those are Fords. Remember when I said she doesn't make sense.

She somehow thinks that pink ribbons say to women that breast cancer is no longer a problem. Of course, that's why there are more of them every year (read this sarcastically).

But the crowning moment was when Brenner wanted to know why, if Komen was putting so much into research, we weren't further ahead in finding the answers – and why wasn't Komen doing something about environmental exposure (gee Barbara, I thought that was BCA's mission). She also attacked Komen's commitment to prevention. Well, since its beginning, Komen has spent $50 million on prevention research, $10 million this year.

Brenner contends that Komen's support of research is all wrong. OK, so what's the answer Barbara. You seem to know better than most of the cancer community how to spend research dollars and I, along with lots of people in Washington, want to know.

I spend a good portion of my day reading studies and the complexity of cancer research continues to amaze me. Do researchers need to collaborate, yes. Do they need to be more transparent, yes. But to lay all of this at the feet of a nonprofit when the government has the National Cancer Institute that isn't doing much better, well. . . .you get my point. It's a puzzle hundreds if not thousands are trying to solve.

I wish I had a list of all the Komen research projects that have led to breakthroughs in treatment. I wish I had a list of the grants that Komen gave based on collaboration. Maybe while we are covering the San Antonio Breast Cancer Symposium this December I'll try to get that list for you.

Actually, I do agree with one thing Brenner said in the interview. When Lyden, who seemed to swallow Brenner's rant lock stock and barrel, asked what people could do that didn't want to give to research, Brenner said, "give to Breast Cancer Action" first, and then she said, in essence, to research who is doing the best work and give there.

Wow, I agree, and I have preached that to everyone I know. But how do you do that? Well, if you are considering a charity, go to one of the sites that evaluate them. Charity Navigator is the largest and here is the page for Komen, which has a four star rating. Breast Cancer Action doesn't have a page because it doesn't fit their criteria that the nonprofit have a budget of at least $500,000. It used to, but it doesn't any more.

You know the big message here is that everyone in the breast cancer fight is climbing the same mountain. We are taking different paths, and our job is to lend a helping hand to all those making a difference – not look for ways to block the path by throwing mud where it doesn't belong.

• Why regulation matters ... but also flexibility
• For the Cure to a broken heart
• Two new drugs approved, one pulled from the pipeline
• Drug approved specifically for treating myelofibrosis
• Erbitux Approved for Metastatic Head and Neck Cancers

Get the facts on health care reform

BY KATHY LATOUR | OCTOBER 1, 2010

In the summer issue of CURE, we offer some of the specific ways that the new health care reform law will affect cancer patients and their families.

While those for and against the new Patient Protection and Affordable health Care Act may disagree whether it will be a positive or negative for the country, everyone agrees that the massive law will require application and interpretation to work out the details.

One of the first things we, as a public, need to do is to understand how the law works and how it applies to us. One of the best ways to do this is to read reports from the Kaiser Family Foundation, a nonprofit, private foundation that focuses on the health care issues in the United States. First, the Kaiser Family Foundation has no association with Kaiser Permanente or Kaiser Industries. The foundation develops and runs its own research and communications programs--sometimes in partnership with other nonprofit or research organizations.

They research, assess, and report on what is happening in health care at every level, from national policy to basic information.

Before you make a determination on the new health care law, get the facts.

• Why regulation matters ... but also flexibility
• For the Cure to a broken heart
• Two new drugs approved, one pulled from the pipeline
• Drug approved specifically for treating myelofibrosis
• Erbitux Approved for Metastatic Head and Neck Cancers

A night of grace and extraordinary healing

BY KATHY LATOUR | MAY 17, 2010

Last week we held an annual event that coincides with the Oncology Nursing Society annual congress. This event honors extraordinary oncology nurses chosen by our readers, who write essays about why we should choose their nurse for the honor. Each year the CURE editorial staff struggles to choose which of the essayists have told the story of their nurse and their "above and beyond" the best.

The event is a celebration of nursing with food and a celebrity mistress of ceremonies. This year actress and singer Ann Jillian filled the role by entertaining and inspiring the nurses as she spoke from the heart about her own cancer experience before helping to hand out the crystal awards given to each nominee as their nominator read his or her essay to the hundreds of assembled oncology nurses from across the country.

This year winner Valerie Bosselman wrote about Dorothy Wahrman, the nurse who cared for her daughter Megan during a recurrence of adrenal cortical carcinoma when Megan was in her mid 20s. It was a gut-wrenching essay about a mother's worst nightmare, the death of a child, and you can read it in the summer issue of CURE.

She wrote of the presence of Wahrman during Megan's chemotherapy and how the nurse was able to transcend the typical nurse relationship with a sixth sense of when Megan or Valerie needed her. Indeed, Valerie wrote of Megan's final hours in a hospice facility and how Wahrman showed up just before they induced a coma to help manage Megan's increasing pain.

She didn't call, she just showed up--at exactly the right time to bid this young woman goodbye.

When Valerie left the stage, I felt strongly that Megan was with her mom at that moment, inspiring her and motivating her to tell the assembled nurses how much their love and care means to those going through the cancer journey.

After the celebration Valerie and I talked about the feeling we both had, and Valerie told me that this award and the ability to tell Megan's story helped her feel some relief and that something positive could come from such a tragedy. She is now working on a book about Megan's journey.

For those of us at CURE who were honored to be there while Valerie read her winning essay, it affirmed our role in the lives of those with cancer and the people who care for them.

It was a very special night and one that no one who was present will forget.

• Learning to be a caregiver
• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey

Health care reform and cancer

BY KATHY LATOUR | MARCH 22, 2010

In the summer of 1986 I became a health insurance aficionado. I was prompted to really take charge of my family's health insurance after spending $10,000 to bring home my new baby daughter, Kirtley, in fall 1985. She was six weeks early and I have yet to tell her that I had to put her on a credit card to leave the hospital – and this was with health insurance.

I had just never read the fine print. I was an insurance dummy. Never again, I vowed. Because my husband at the time was self-employed and I was freelancing while taking care of our baby, I searched and searched to find a policy that had a low out-of-pocket before they paid 100 percent and would be affordable at $200 a month for the family. Yeah, I know it sounds low, but remember that this was 25 years ago. I signed us up on August 1, 1986.

The reason I remember the date so well is that in October, 1986, when my daughter was 13 months old, I was diagnosed with breast cancer at age 37.

The insurance policy covered all but $1,000 and I was reassured that the system could work if I was diligent. But when it came time to renew my policy, August 1, 1987, I received a letter from the insurance folks that I was now going to have to move to a high-risk pool and our monthly cost would be $800 – four times the monthly rate I had paid, and one that we could not afford. I called to no avail, learning that basically insurance companies can do anything they want.

I was one of the lucky ones since I had just taken a job teaching at Southern Methodist University and had numerous options for good health care. With the one month grace period on my old policy, my family was covered with three days to spare.

It has only taken 23 years to get a law that will make what happened to me against the law. President Obama plans to sign the bill on Tuesday.

I know it's complicated to read and understand what is happening in health care reform. It's particularly hard if we have to translate the rules to cancer and how it will affect us. I don't understand it fully, and I know that whatever is passed will have to be tested and loop holes filled. But it's a start.

The best place I have found to read what it means for us as cancer survivors is found on a chart compiled by Catherine Knowles at the Colorectal Cancer Coalition (C3) that compares the House versions, the Senate version, and the House Reconciliation version we will get soon. Read it, and try to educate yourself so you won't be taken in by the one-liners on either side. If you want a more detailed exploration, the Kaiser Foundation has put up another side by side.

This should not be a partisan issue, but alas, it is. This means it is more important than ever for us to understand what it means. The Kaiser Foundation has also polled Americans to find out what they know, and one fact that is particularly difficult is that, according to the poll the public does not understand some important elements of the reform legislation. Only 15 percent of Americans, for instance, know that the nonpartisan Congressional Budget Office has said the legislation will decrease the federal budget deficit over the next 10 years. And 55 percent believe the CBO has said the legislation will increase the deficit over that period.

Educate yourself and let your elected representatives know what you want.

• Why regulation matters ... but also flexibility
• For the Cure to a broken heart
• Two new drugs approved, one pulled from the pipeline
• Drug approved specifically for treating myelofibrosis
• Erbitux Approved for Metastatic Head and Neck Cancers

Infections. . . newest strains are scary

BY KATHY LATOUR | MARCH 8, 2010

In the fall of 2008 I left the hospital after what I planned as my last-ever breast surgery. The year before, I had been diagnosed with DCIS in my left breast, which was treated with a mastectomy. I had had a mastectomy on m right breast in 1986 as part of my journey with stage 2B breast cancer.

After the 2007 mastectomy for DCIS, I had immediate reconstruction with the back flap and an expander inserted. My trip back to the OR in fall 2008 was to replace the expander with the newest model of implant. The trickier surgery was a redo of my then 21-year-old reconstruction on the right side. My surgeon planned to take out the old implant and replace it with the same one used in the left side to fill in a divot on my chest.

All was well for a week, then, the day I went in to get the drains out, I began to feel really bad. To make a long story short, I had a staph infection in the right breast. In fact, the surgeon took one look at what was in the drain and sent me to the infectious disease specialist one floor down. What followed was a picc line, my own I.V. pole, and oral antibiotics for three months. It was horrible. And worse than the fatigue and feeling terrible in general, was the depression that accompanied my body dumping all my serotonin in reaction to an infection.

When I learned my infection was methicillin-resistant Staphylococcus aureus, also known as MRSA, I was really upset. But I soon learned that there were a number of drugs to treat MRSA, and we would become good friends.

What has become an ongoing battle for me even today seems not quite as bad when I read about the newest strains of hospital-associated infections in a recent article in The New York Times, some of which have no drugs available and are killing people right and left. These global nasties, which are spreading in a number of ways, are a testament to the resilience and morphing ability of these bacteria. The newest infections, called Gram-negative organisms, can cause severe pneumonia and infections of the urinary tract bloodstream and other parts of the body.

The scary part of this is that as more and more resistant strains are popping up, fewer and fewer antibiotics are being developed--in part because they are costly to develop for such tricky organisms and then there isn't much payback when the patient only takes them for a few weeks. The challenge is that advocacy groups argue that more antibiotics will only result in more resistant strains that are harder to kill, and the real job is to keep patients from getting infections while they are in the hospital. It's a scary problem.

• Why regulation matters ... but also flexibility
• For the Cure to a broken heart
• Two new drugs approved, one pulled from the pipeline
• Drug approved specifically for treating myelofibrosis
• Erbitux Approved for Metastatic Head and Neck Cancers