November 30, 2007 - Progress on Bexxar and Zevalin

Thank you to all who wrote to government officials about the Medicare reimbursement policies for the radio- immunotherapy drugs, Bexxar and Zevalin (see November 14th, below). It seems the flurry of lobbying activity has had some effect. It’s too early to declare victory, but there are some encouraging signs.

The Lymphoma Research Foundation reports, on their website, that the Senate Finance Committee leadership is preparing a Medicare and Medicaid measure that will be considered by the full committee next week. It includes a one-year freeze on reimbursement levels for Bexxar and Zevalin.

It takes a lot of money to develop a new drug. Some is put up by the pharmaceutical company during research and development. The rest is paid afterwards, by consumers and their insurance companies. It’s scary to think that effective medicines could be pulled from the market if insurance reimbursements drop too low.

Let’s hope that won’t be the case with Bexxar and Zevalin.

Another Way for NHL Patients To Fight for RIT Drugs

I'm posting this e-mail message here as a public service to other patients with forms of NHL that are potentially treatable with the radioimmunotherapy (RIT) drugs Bexxar and Zevalin. Betsy de Parry, a lymphoma survivor and activist, is inviting comments on her blog, which lobbyists in Washington can use to tell Congress about real cases like ours. If you have NHL and are concerned about the possible disappearance of RIT drugs like these, please visit Betsy's blog and post a brief comment there, including basic details of your situation.

(Scroll down to my November 14th entry for more on this issue. I'm including another link to the Newsweek article by Jonathan Alter, that explains this complex issue. CLICK HERE for that article.)

Thanks!

***

Hi All,

As you all know by now, Bexxar and Zevalin are seriously threated. I've been talking, almost daily, with lobbyists in Washington who are working to have the ruling overturned, and they are telling me that hearing from patients is helping them to convince the staffers. They suggested posting a blog and asking people to make comments which they could then print and take to their meetings.

Thus - if any of you want to voice your opinion - short and sweet is fine - you can do so on my blog which is at www.lymphomablog.blogspot.com

We have very little time to accomplish this mission - if the ruling is not overturned by 12/31, it takes effect on January 1. So, language has to be written into a bill which then has to pass before 12/31. Let's hope that push/pull/shove politics doesn't stand in our way.

Thanks so much,

Betsy

P.S. Ok, this is a long shot, but several people, including senator's offices, have said that good old-fashioned protests work because the press usually picks up the story - and what could be more heartbreaking than cancer patients pleading for drugs to save their lives? Karl Schwartz is organizing one for next Thursday in front of Senator Specter's office in Pennsylvania. Does anybody want to think about going to Lansing and protesting in front of Stabenow's office? I'll do it if at least 9 or 10 others want to join. Or in any of your own states?

November 24, 2007 - Tree Farm

This afternoon, we pile into the car with various family members and drive to Conover’s Christmas Tree Farm in Wall Township, to pick out our tree for this year. Besides Claire and myself, it’s Ania (visiting from California for the Thanksgiving holiday); Claire’s brother Victor and his two kids, Chelsea and Nick; and our niece, Elizabeth, who lives with us.

We’re not going to bring a tree home today. We’ll wait till it’s closer to Christmas. By going out now, though, we can tag ourselves a good one, and know it will be ready for us as the holiday grows closer.

Eventually, our tree will sit off to one side of the Manse living room, where it will be ready for the youth-group Christmas carolers to sit around, when they return for hot chocolate after singing for some of our church’s homebound members. It will be the centerpiece of our family Christmas celebration too, of course.

It’s an ideal day – sunny, not too cold. We walk up and down amongst the rows of trees, searching out the ones that still display the two-part paper tags indicating they’re unclaimed. After a good bit of walking, we call everyone together for a consultation, settle on a tree that seems tall enough and full enough, then tear off the lower portion of the tag.

It’s interesting to observe the differing sizes of trees. Here and there you can see where the farmers planted a row of 6 or 8 trees of one particular type, that are of similar heights. Other places, you can see where a tree has been cut down in the past year or two, and has been replaced with a seedling.

This is not a business for people who thrive on instant gratification. To operate a Christmas tree farm, you’ve definitely got to take the long-term view. Evergreens are comparatively fast-growing trees, but still it takes 6 or 8 years before they grow big enough to grace someone’s living room. Most other agricultural operations have an annual harvest. In the Christmas-tree business, you plant your seedlings, then you watch and wait.

I’m learning to take a big-picture view with my cancer treatment, as well. My indolent cancer cells are growing, but slowly (or perhaps, with the “stable” results from my last CT scan, they’ve plateaued for a little while). There’s a part of me that wishes for a swifter resolution, in the form of some immediate treatment, but that’s not going to happen. Beating this thing is a long-term proposition. Like tree farmers, we’ve got to think in terms of years.

For today, though, it’s a nice outing with the family. A little normalcy. Life is good.

November 21, 2007 - Just Give Thanks

Tonight’s Thanksgiving Eve. Unlike all my earlier Thanksgiving Eves at this church, I’m sitting at home, rather than leading a worship service.

That’s because the Session, our congregation’s governing board, decided some months ago to cancel this year’s Thanksgiving Eve service. (We moved our Thanksgiving focus to the previous Sunday’s worship service, instead.) The numbers of Wednesday-evening worshipers had been dwindling for years. When we reached the point where there were fewer people in the pews than in the choir loft (many of those people being family members of the singers), we decided it was time to bag this many-decades-old tradition. The people had voted with their feet long before. The times they are a-changin’.

I was reluctant to cancel it, myself. Of all the special worship services we offer throughout the year, the Thanksgiving Eve service has always been one of my favorites. It was simple, low-key, and somehow pure. No Santa Claus or Easter Bunny hanging around the edges of people’s consciousness. Just give thanks, that’s all.

But, we’ve been facing increasing pressure from the burgeoning football- related activities from Point Pleasant Beach High school next door. When school officials moved the homecoming parade from late afternoon to evening, several years ago – blocking nearby streets and using them as the staging area for the floats – that meant on-street parking places were at a premium. Here in the suburbs, folks think having to walk a couple of blocks is a terrible inconvenience. Numbers were dwindling for other reasons, besides. Some of our regulars were traveling, and others were stressed out about getting pies into the oven for the next day’s feast.

I think the Session made the right decision: but, still, I miss it. I miss it especially because I think giving thanks is therapeutic. It moves our attention away from ourselves and our complaints, and onto God.

The Japanese poet Issa is considered to be among the greatest writers of Haiku. Issa’s very last poem was discovered in 1826, written on a scrap of paper under the pillow of the bed on which he’d just died. It was winter, and Issa had been sleeping in a crumbling storage shed, after his own house had burned down. Here’s what he wrote:

There are thanks to be given:
this snow on the bed quilt -
it too is from Heaven.

I don’t know what they wrote on Issa's tombstone, but it could very well have been, “Here lies a happy man.”

There have been snows falling in my life, as well – the chilling awareness of the cancer within me. My spiritual growing edge is in learning to give thanks even for some of the experiences that cancer is bringing into my life.

Another great poet, Robert Louis Stevenson, experienced his share of suffering: he died a slow death of tuberculosis. Here’s some advice he once gave:

“The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life.”

A profound sentiment, and an example for us all. Happy Thanksgiving!


“I will give thanks to the Lord with my whole heart;
I will tell of all your wonderful deeds.”

- Psalm 9:1

November 19, 2007 - My Cancer's Better Than Your Cancer

This evening I attend the monthly blood-cancer support group at The Wellness Community, sponsored by the Leukemia and Lymphoma Society. There are about eight of us, sitting around in a circle. Our facilitator is Tracie, an oncology nurse: well-informed, and relentlessly upbeat. Various blood cancers are represented: B-cell lymphoma (that’s me), T-cell lymphoma, multiple myeloma, Hodgkin lymphoma, chronic lymphocytic leukemia (CLL), acute myelogenous leukemia (AML).

Introducing herself, a woman with newly-diagnosed CLL says, “They tell me I’ve got the good cancer.”

A woman with Hodgkin lymphoma responds, “They told me I’ve got the good cancer.” There are smiles all around, as we recognize the macabre form of one-upmanship. Nobody wants to get into a game of “My cancer’s better than your cancer.” What would be the point?

Sometimes oncologists do say that sort of thing, in an effort to be encouraging. I’ve heard it myself from Dr. Lerner, who told me, at the time of my NHL diagnosis, “If you have to choose a form of cancer to have, this is the one to choose.”

It sounds suspiciously like the sort of situation some parents get into, as they tell each of their children in turn, “I love you best of all.” They don’t, of course. They love all their kids equally. But they think at the time it’s an encouraging thing to say, and for some reason it doesn’t dawn on them that the kids will ever talk to one another.

Is there a good cancer? Of course not. What the doctors mean, when they say such a thing, is “Yes, you’ve got a dread disease, but I think I can help you. I’ve got a lot of treatments to choose from, and can probably keep you in remission longer than you think.”

Support groups are wonderful, but they’re really not for making comparisons. They’re a place for honest sharing and for listening. The trick is to focus exclusively on the person speaking, and try to avoid saying, “He’s better off than me,” or “She’s worse off than me.” At their best, these groups are a place not only for exchanging practical information, but also for giving one another the precious gift of listening.

From what I’ve experienced so far, this group is a good one.

November 15, 2007 - Stable

I’m thinking, today, about a word I heard yesterday on the telephone: the word is “stable.” I was speaking to a nurse from Dr. Lerner’s office about the CT scan I had last Thursday. I hadn’t heard any results, so I thought I’d give a call and find out what they’d heard from the radiologist. When the nurse called back a little later, she said Dr. Lerner had asked her to pass on the message that my cancer is stable.

“Stable, as in no growth?” I asked.

“Yes, it looks just the same as your last scan,” she replied.

I asked her to repeat it, just to be sure. “This is good news,” she reiterated. “No growth.”

I’m not scheduled to see Dr. Lerner until December 12th, so I won’t have an opportunity to question him in detail until then. For now, I can only receive this update with guarded optimism.

It’s not completely good news. The cancer’s still there, after all. But, I’ll take “no growth” over the alternative, any time.

I’ve had other scans when the results were “no change” – but these were all while I was in remission. This is the first time I’ve been out of remission and had the “no growth” result.

That means there’s active cancer inside me, but it’s not doing much of anything. It’s just hanging around, like gang members on a street corner. The cops may be eyeing them nervously, but there’s nothing they can do. Just stay vigilant.

So, that’s where I am right now. The cancer is still there, but it’s stable. While it may be menacing, it’s not immediately dangerous. So, we just continue to keep an eye on it.

During my sabbatical year, I spent a week on retreat at the Benedictine Monastery of Christ in the Desert, in northern New Mexico. Reading about the Benedictine Order in preparation for that experience, I recalled something I’d learned in church history class, back in seminary: that stability is considered a good thing in the monastic world. It’s a positive virtue. The Latin word they use to describe it is statio, as in “stationed” or “stationary.” On one level, it means a monk typically resides in a single monastery for life. Requests for transfers from one monastery to another are never granted casually, and then only for a good reason. On another level, statio suggests an island of peace in a chaotic world. It’s a stoic determination to make the best of where you are, to bloom where you’re planted, to praise God for life and receive it thankfully.

So, my cancer is stable. The spiritual challenge for me, in these days, is in learning to practice that sort of statio in my own life. As always, it’s a question of learning to live with cancer. Those leather-jacketed toughs are going to be lounging around for a while, it seems. I guess I’d better get used to them.

November 14, 2007 - Here's a Way You Can Help Me

I know how a lot of you friends and family members have been wondering what you can do to help me, as I prepare for whatever further cancer treatment may be in my future. Ever since my chemotherapy ordeal ended and my family and I no longer needed you to bring food over to the house, there hasn’t been much I could suggest by way of concrete action – except, of course, for supporting me with your prayers and good wishes (for which I’m always grateful).

Now, here’s a little something you can do, and it will only take a couple of minutes. It’s along the lines of political action. I know some of you may be more comfortable than others with the idea of writing your U.S. Senators and Representative, but this is one case where your letter could have a very real impact on whether I will eventually have access to medicine that could save my life.

Take a look at this article by Jonathan Alter (a mantle-cell lymphoma survivor, himself), from the recent Newsweek. It’s called “How Washington Is Nixing a Cancer Cure.”

I’ve written, before, about the radio- immuno- therapy drugs, Bexxar and Zevalin (see my June 23, July 14 and July 20 blog entries). Now, it seems that changes in Medicare reimbursement guidelines could make these promising drugs disappear altogether – despite the fact that they’ve been proven highly effective against follicular non-Hodgkin lymphoma (the type I have).

Why should Medicare reimbursement policies make any difference to someone like me, who’s too young for Medicare? The answer is that Medicare is such a large player in the multi-billion-dollar world of pharmaceuticals that their refusal to pay a fair price for a drug will start a domino effect. First, hospitals and clinics will stop offering it. Then, its manufacturers will have no choice but to cut their losses and pull it from the market. Jonathan Alter explains the machinations of the system far more clearly than I could: so, you’ll have to click on the link and read his article, if you truly want to understand all the ins and outs.

For me, this is more than merely a matter of casual interest. It’s personal. Bexxar and Zevalin are high up on the list of possible future treatments for me. I’ve already responded well to rituximab (Rituxan) – the medicine that serves as the targeting mechanism for Bexxar and Zevalin, enabling them to deliver tiny particles of radioactive material directly to malignant NHL cells.

It’s to my advantage that my doctors keep as many treatment arrows in their quiver as they possibly can. Your e-mail to your U.S. Senators and Representative will help make it so.

Here’s how to contact them. First, highlight and copy the text below into your computer’s clipboard. Then, go to this web page, and click on “U.S. Senators” and “U.S. Representatives” to find the appropriate officials. Then, after completing the preliminaries, simply paste the text into the field for the body of the message. Make whatever modifications you wish, of course.

(The following was sent to me by Betsy de Parry, a fellow NHL survivor who received Bexxar five years ago, and has not had a recurrence since then. She had not been responding well to other treatments, and credits Bexxar with saving her life. I’ve edited her text down quite a bit; the original was even longer.)

Once again, here are the links:

CLICK HERE for the Newsweek article.

CLICK HERE to send an e-mail to your U.S. Senators and Representative.

Now, here’s the text of the sample e-mail. (There's also an alternate approach, which involves sending a brief e-mail to Betsy de Parry, who's gathering these for the use of lobbyists; I've included that additional information at the end.)

On November 13, Newsweek released a story entitled “How Washington Is Nixing A Cancer Cure.” The link to it is: http://www.newsweek.com/id/70301

The ruling and the drugs to which the article refers is:

RE: CMS-1392-FC, Payment for Radiopharmaceuticals

BEXXAR® Therapeutic Regimen (Tositumomab + Iodine 131 Tositumomab) and

ZEVALIN® Therapeutic Regimen (Ibritumomab Tiuxetan)

I am writing to you in the hope that you will intercede on behalf of thousands of patients whose very lives depend on these drugs which will soon become extinct if the ruling is allowed to take effect on January 1, 2008. I am writing as an individual, not as a member of any group or organization.

Bexxar and Zevalin have proven to be highly effective treatments for non-Hodgkin lymphoma. They are examples of a type of treatment known as radioimmunotherapy.

Radioimmunotherapy, categorized as a radiopharmaceutical under the Medicare payment system, has presented challenges for the Centers for Medicare and Medicaid Services (CMS) since it was first approved. This is because it does not fit neatly into existing categories. Low Medicare reimbursement rates have already made it financially difficult for hospitals to offer these treatments. Several publications, including the Journal of the National Cancer Institute (Volume 99, Issue 7, April 4, 2007) and the New York Times (July 14, 2007), have reported that only 5% and 10% of patients who are eligible for radioimmunotherapy have actually received it.

On November 1, CMS published CMS-1392-FC, which covers changes to the hospital outpatient prospective payment system (OPPS) and sets payment rates for 2008. The new rate cuts payment for Bexxar to approximately one-half its cost. Similar issues apply to Zevalin. This will force hospitals to choose between subsidizing or abandoning the treatment. Abandonment is the most likely response, as both the American Society of Hematology (ASH) and the American Society of Clinical Oncologists (ASCO), and others, have warned, in letters they sent to CMS during the comment period prior to the final ruling.

ASH, in fact, states that “It (the ruling) will eliminate one of the few treatment options and perhaps the only treatment option for some patients with non-Hodgkins lymphoma who have failed chemotherapy treatment.”

CMS, in its final ruling, disputes this fear, saying that “given that the Medicare population is such a dominant portion of the population to which these services are targeted, we do not believe that hospitals will cease to provide the service.” With all due respect, how does CMS expect hospitals to provide any service for which they will lose money?

Additionally, CMS warns that “under 42 CFR 489.53(a)(2), CMS may terminate the provider agreement of any hospital that furnishes this or any other service to its patients but fails to also furnish it to Medicare patients who need it.” Surely no hospital will jeopardize its provider agreement. Thus, if these treatments are unavailable to Medicare patients, they will also be unavailable to anyone else.

CMS has based their recommended reimbursement rates on data from previous hospital claims that they themselves have admitted is flawed, due to widespread errors in coding. Using data that was known to be flawed, the new rate could not have been set accurately.

One thing is certain. The new rate will have long-term and devastating consequences. It will undoubtedly condemn these drugs to medical history. Several scientists and organizations fear that it will make it harder for pharmaceutical companies to develop future innovative therapies.

Much worse, this ruling surely condemns some patients to death.

Because time is so limited, I am asking that your office intercede on behalf of patients whose very lives depend on this and future treatments. I deeply appreciate your help with this matter. Lives are depending on it.

Thank you.

***

Here's an alternate way to express your views on the Bexxar/Zevalin issue (see the text of the e-mail from Betsy de Parry, below). If you're so inclined, you could do this instead of, or in addition to, e-mailing your Senators and Representative direclty.

Dear Friends,

As you know from reading the Newsweek story ( http://www.newsweek.com/id/70301 ), a very effective cancer drug is about to disappear. Several of us are mounting vigorous opposition - and to those of you have written your reps about it, many thanks. Following is way we can make our voices heard much faster than going through the traditional route of emailing our reps and hoping someone reads it.

We now have help from two lobbyists in Washington who know how to maneuver far better than we do. They are working diligently to arrange meetings with senators and representatives who may be able to help reverse the ruling. Karl Schwartz, President of Patients Against Lymphoma, or Karl and myself, may attend these meetings with him. Whether we do or not, it will be hugely helpful for them (or them and us, as the case may be), to represent the patients, families and friends whose lives will be affected if this ruling takes effect.

But – we don’t have time to create another online petition as we did before (which many of you signed - thank you!). Instead, I have volunteered to collect comments, and we need as many as we can possibly get – and as quickly as we can get them (like by next Monday morning).

I have set up a separate email account specifically for this purpose. If each of you will send your comments to that account, I will print them and get them to Washington. The more comments we have, the more impact we have – so I beg each of you to voice your concerns and to ask everyone you know to do likewise. If 100 of us gets 10 people, that's 1000 messages that go straight to Washington!

The email account is:

bdeparry@gmail.com

Please write “CMS-1392-FC” in the subject line. Your message does not need to be long. Feel free to write whatever you wish, and if you aren’t certain what to write, simply copy and paste the following:

I respectfully request an immediate reversal of CMS-1392-FC as it relates to Bexxar and Zevalin.

Please sign your name and include your city and state.

Your information will not be shared with anyone else. It will only be used for the purposes of lobbying our politicians to reverse this ruling.

Finally, "thank you" is an understatement for your support. Words can't convey how much it means.

Hugs,

Betsy

November 11, 2007 - Insurance Sleaze

I just ran across this article, which is the ultimate in sleazy insurance company practices. I’ll begin by quoting an excerpt...



“HEALTH INSURER TIED BONUSES TO DROPPING SICK POLICYHOLDERS
By Lisa Girion
Los Angeles Times Staff Writer

November 9, 2007

One of the state's largest health insurers set goals and paid bonuses based in part on how many individual policyholders were dropped and how much money was saved.

Woodland Hills-based Health Net Inc. avoided paying $35.5 million in medical expenses by rescinding about 1,600 policies between 2000 and 2006. During that period, it paid its senior analyst in charge of cancellations more than $20,000 in bonuses based in part on her meeting or exceeding annual targets for revoking policies, documents disclosed Thursday showed.

The revelation that the health plan had cancellation goals and bonuses comes amid a storm of controversy over the industry-wide but long-hidden practice of rescinding coverage after expensive medical treatments have been authorized.

These cancellations have been the recent focus of intense scrutiny by lawmakers, state regulators and consumer advocates. Although these ‘rescissions’ are only a small portion of the companies' overall business, they typically leave sick patients with crushing medical bills and no way to obtain needed treatment.”

And who is the patient who lost her coverage? Her name is Patsy Bates. She’s a hairdresser. Health Net cancelled her in the middle of her chemotherapy treatments for breast cancer.

Their reason? On her application for insurance, she had understated her weight by 35 pounds, and neglected to mention that she had once been screened for a possible heart condition, after having taken the now-discredited diet pill, Fen-Phen.

Insurance companies are within their rights in rescinding policies, if they can prove an application was fraudulent because it misstated or omitted vital health information. Yet, there’s a considerable gray area in many of these cases. Did the patient intend to mislead, or was it an innocent oversight? Was the omitted information really significant enough that it would have led the company’s underwriters to deny the application?

The company seems aware of how explosive the details of this case are:

“Health Net had sought to keep the documents secret even after it was forced to produce them for the hearing, arguing that they contained proprietary information and could embarrass the company.”

Embarrassing? I'd say that’s an understatement. Isn’t this sort of thing illegal?

Indeed it is. According to the LA Times, California law does prohibit insurance companies from paying bonuses to their claims reviewers, based on how many claims they deny. The company’s lawyer is claiming, in defense, that the employee in question is not a claims reviewer, but an underwriter.

Yeah, right. I’ll bet the company pays the lawyer big bucks to parse the English language – just like they paid their “underwriter” big bucks to snatch away medical coverage from a cancer patient in the middle of her chemotherapy.

Here’s how the cancellation came down, for this particular patient:

“Bates, 51, said the first notice she had that something was awry with her coverage came while she was in the hospital preparing for lump-removal surgery.

She said an administrator came to her room and told her the surgery, scheduled for early the next day, had been canceled because the hospital learned she had insurance problems. Health Net allowed the surgery to go forward only after Bates’ daughter authorized the insurance company to charge three months of premiums in advance to her debit card, Bates alleged. Her coverage was canceled after she began post-surgical chemotherapy threatments.

‘I’ve got cancer, and I could die,’ she said in a recent interview. Health Net ‘walked away from the agreement. They don’t care.’”

Memo to Governor Schwarzenegger: you were once the Terminator, right? How about terminating Health Net’s license to sell insurance in California? Given what this patient, and others like her, have suffered at these pirates’ hands, it seems the least you can do.

It’s like I’ve been saying all along: it’s a jungle out there, in the world of medical insurance. And a jungle’s not an especially healthy place to be – for people with cancer, or for anyone else.

November 8, 2007 - No Test Anxiety

This morning I arise at 6:30 to slug down a bottle of contrast fluid, then at 9:00 drive over to Ocean Medical Center for a CT scan. The routine’s getting to be familiar indeed: the scan’s over before I know it. I don my clergy ID badge, afterwards, and look in on several patients from our church – making sure to cut off my patient ID bracelet before my first visit.

The roles reverse pretty quickly. I’m not a member of the hospital staff, but visiting pastors like me do get to wear a hospital photo-ID badge. Those two items – the paper wristband and the more substantial, credit-card-like plastic badge – are symbolic of a certain ambiguity of role I feel at times. Maybe I ought to just wear them both, I think to myself – just to make life interesting.

I’ve heard some cancer survivors talk about how anxious they get, around the time of their scans. I can’t say I’m feeling anxiety about the scan itself. I look on it this way: whatever it’s going to reveal is already going on within my body, so worrying about it isn’t going to make a bit of difference. It’s a wonderful thing that the doctors are able to peer into my body, non-invasively, and take measurements of my swollen lymph nodes.

I’m aware these results will determine whether it will be watch-and-wait for another three months, or whether further treatment of some sort will be called for. That’s momentous, to be sure, but I’m fortunate enough to feel at peace about it. I have a chronic, incurable cancer that’s already in the process of coming back. I also have every reason to expect that, when the malignant cells become numerous enough, it will be treatable. The only imponderables are how long it’s going to take, and then, what treatment we try next.

Speaking of treatments, there was a setback to cancer research this week, here in New Jersey. On Election Day, voters decided, 53% to 47%, to answer “no” to a public question that would have allowed the State to borrow millions of dollars to fund stem-cell research. (This question was meant to be New Jersey’s answer to the Federal government’s refusal to fund any research that might involve embryonic stem cells.) There was a well-financed campaign against this measure, that stressed not so much the moral objections from right-wingers (who, unreasonably, equate using a fertilized egg in the laboratory with destruction of a viable human life) as the impact on the State’s overstretched budget. The opponents also suggested that, if the pharmaceutical companies haven’t seen fit to fund this research out of their R&D budgets, then why should the State do so? (This, ignoring the fact that public-private partnerships are quite common in medical research, and have produced some significant breakthroughs in the past.)

It’s a shame more New Jersey voters didn’t realize the rich potential of stem-cell research to make a real, positive impact on human lives. Most people know someone, perhaps even a loved one, who has benefitted, or will one day benefit, from medicines developed through stem-cell research (if you know me, then you already know someone who has). I can’t think of a better use of tax dollars, myself.

For now, it’s back to business as usual – which means watch and wait.

November 7, 2007 - Freeheld

This evening, Claire and I go to see a movie: a short documentary, Freeheld. It’s being shown at Christ Episcopal Church in nearby Toms River, our county seat (and my hometown). Freeheld is the story of the final days of Lieutenant Laurel Hester, an Ocean County Sheriff’s Officer who died of lung cancer.

As a cancer story, the film is compelling enough. Yet, there’s also a civil rights element to her story (which is why the director, Cynthia Wade, made the film). Freeheld is also the story of Laurel Hester’s battle with the Ocean County Freeholders (our county governing board), to get her domestic partner of five years, Stacie Andree, named as the beneficiary of her pension.

The New Jersey Supreme Court – inspired, no doubt, by Laurel’s case – has since ruled that all counties in the state must extend spousal benefits to same-sex domestic partners. The movie tells the tale of several Freeholders meetings, during which the elected officials stonewalled Laurel, Stacie and their supporters, before finally giving in and granting Stacie the pension rights.

About half the movie consists of footage from Freeholders meetings, but the rest of it consists of domestic scenes of Laurel and Stacie coping with the cancer. Much of it is familiar to us. Especially moving, to me, is the scene depicting Stacie cutting off Laurel’s hair with a set of electric clippers (it had already begun to fall out, due to chemotherapy). Then, the two reverse roles, and Laurel cuts off Stacie’s hair: a symbol of solidarity on Stacie’s part. There’s also the glazed, vacant look in Laurel’s eye; I remember when I looked like that, in the midst of my chemo treatments.

After the Freeholders relent and grant the couple’s request, the final scenes of the film depict Laurel’s funeral at St. Mary’s By-the-Sea Episcopal Church, which is located across the street from our church. It’s a typical police officer’s funeral, with uniformed officers marching to the skirl of bagpipes. Laurel had been, among other things, an undercover narcotics officer. She put herself in harm’s way on numerous occasions, then had to endure – for a time – the fear that her partner might lose their house after her death.

Laurel lived right here in Point Pleasant; Stacie still does. John Bartlett, one of the Freeholders, was a student teacher in my high-school classroom in Toms River, before leaving teaching to enter politics. This is, for me, a hometown story.

It also comes close to home, for us, because of the cancer element. My story has turned out better than Laurel’s. I start to write, “There but for the grace of God...” but then change my mind and delete those words. It wouldn't be right to say that, for God’s grace was with Laurel in death, even as it is with me in life. "Neither death, nor life... will be able to separate us from the love of God in Christ Jesus our Lord" (Romans 8:38-39).

See Freeheld, if you get the chance. They say it’s short-listed for an Academy Award nomination for Best Short Documentary.

November 6, 2007 - The Next Big Thing in Cancer Treatment?

One of the realities of being a person with cancer at this time in history is that there are a number of promising treatment programs on the horizon. Among the strangest of these – “strange” in terms of where it came from – and among those offering the greatest paradigm-busting potential, is a technique invented by a man who isn’t a cancer researcher at all.

His name is John Kanzius. He’s a retired television broadcast executive and inventor who lives in Erie, Pennsylvania. He also has leukemia. When he was diagnosed, he began to turn his creative energies to thinking about how radio waves might be useful as a weapon against cancer.

Knowing something of nanotechnology – a frontier of physics, in which scientists work with very tiny particles to accomplish various tasks – Kanzius postulated a system in which microscopic metal particles would be injected into a cancer patient’s body. Those particles would have previously been bonded to a targeting molecule that seeks out and attaches itself to cancer cells.

This targeting molecule is similar, I think, to the molecule at the heart of Rituxan, the monoclonal antibody therapy I received along with my chemotherapy – although, instead of being bonded to a chemical agent, it would be bonded to these metal molecules. If I’m right about that, then it’s also similar to Bexxar and Zevalin, the promising radioimmunotherapy drugs that bond radioactive particles to the same targeting molecule.

Kanzius’ approach is different in that it represents a third way. The curative agent would not be chemical, and not radioactive, either, but metallic. Once the metal nanoparticles would have found their place, attaching themselves to the surface of cancer cells, the patient’s body would be bombarded with low-frequency radio waves, heating the nanoparticles and cooking the cancer cells to death. No other cells would be affected, because the cancer cells would be the only ones that had the nanoparticles attached to them.

It’s not too much of an exaggeration to say that Kanzius has thought up a way to microwave cancer cells.

It’s simple, elegant – and, it just might work.

So think a number of experts, anyway. There’s evidently getting to be a buzz around Kanzius’ work, as seen in this news article.

CBS News has also done a story on Kanzius and his machine. Click HERE to view it.

The thing that will make or break his invention, of course, are the nanoparticles. Can they be successfully bonded to the targeting molecule and delivered precisely to the malignant cells that need to be heated, without leaving quantities of stray nanoparticles behind that could harm healthy tissue? This is something beyond Kanzius’ engineering expertise. It will require the work of biochemists.

But still, it’s a promising development. It reminds me of some other significant inventions that have been created by passionate, outside-the-box thinkers who worked outside recognized academic and research institutions. I’m thinking of Thomas Edison and the Wright Brothers, who were essentially backyard tinkerers; of Albert Einstein, who was working as a patent clerk at the time he published his groundbreaking papers on relativity; and also the Australian physicians Barry Marshall and Robin Warren, who came up with the bold idea that stomach ulcers might be attributable to bacteria, then won the Nobel Prize because they were right.

It’s still way too early to say if John Kanzius is cut from the same cloth. But, he could be.

November 3, 2007 - Death By Lack of Insurance

I don’t want to go on and on, in this blog, about the medical-insurance issue, but there seem to be more and more articles in the press that tell the stories of unfortunate people who get sick and can’t get treatment. These stories debunk the arguments from conservatives that, between charity care offered by hospitals and emergency-assistance programs offered by pharmaceutical companies, there aren’t that many holes in the safety net. I can only hope that America is starting to listen.

Bob Herbert’s column from today’s New York Times tells of a man named Lonnie Lynam, a skilled, self-employed carpenter from Texas, who recently died of brain cancer.

Lonnie thought his headaches were migraines. They weren’t. Lacking health insurance, he avoided going to the doctor. He figured he could tough them out. (How was he going to pay for an MRI?) When his headache became so bad, one day, that he couldn’t stand up, his brother rushed him to the emergency room.

They diagnosed him, and referred him to an oncologist. There were treatments that could have helped him, but he lacked the cash. “Well, I didn’t get the treatment today,” he’d say to his mother. When she asked why not, he’d continue, “Well, I got in there and they found out I didn’t have any insurance and the woman told me I’d have to come back another time because she’d have to check with the doctor or somebody.”

It wasn’t an outright rejection. It was couched in bureaucratic mumbo- jumbo. But, the effect was the same.

Herbert concludes, “Lonnie died on March 26 at age 45. The cause of death was cancer, aided and abetted by an absurd, unnecessary and utterly unconscionable absence of health insurance.”

Herbert quotes some sobering statistics from the American Cancer Society:

“A woman without health insurance who gets a breast cancer diagnosis is at least 40 percent more likely to die,” said John Seffrin, the cancer society’s chief executive.

According to the cancer society: “Uninsured patients and those on Medicaid are much more likely than those with private health insurance to be diagnosed with cancer in its later stages, when it is more often fatal.”

The uninsured (and underinsured) are also much less likely to get the most effective treatment after the diagnosis is made.

There are 47 million Americans without health insurance and another 17 million with coverage that will not pay for the treatments necessary to fight cancer and other very serious diseases.

The bottom line, said Mr. Seffrin, is that “the number of people who are suffering needlessly from cancer because they don’t have access to quality health care is very large and increasing as I speak.”

In an earlier era, medical care was less expensive. There weren’t CT scans, MRIs, monoclonal antibody therapy, heart-bypass surgery, kidney dialysis. If you had clogged coronary arteries, diabetes or lymphoma, you would die from these things, not all that long after you were diagnosed. It didn’t much matter if you had medical insurance or if you didn’t, because there were only so many items in the doctor’s black-leather bag, and none of them were astronomically expensive.

Nowadays, when one day in the chemo suite can cost more than several months’ salary for a laborer, lack of insurance can literally mean the difference between life and death.

The USA is the only country in the developed world that still operates in this way. Is it possible that we can be so right, and every other nation – with their universal health-care benefits – can be so wrong?

November 2, 2007 - Run, Gerry, Run

She was the first woman to achieve a major party’s nomination for Vice President. These days, Geraldine Ferraro is running a race against cancer – and also, a race in favor of expanded health-care coverage for all Americans.

Today I read a recent Newsweek article, “How To Mend a Sick System,” in which Ferraro makes the case for health-care reform.

In the article – which she wrote – she tells a bit of her own cancer story: about how she was diagnosed with multiple myeloma (a blood cancer, in the same family with leukemia and lymphoma) in 1998. The doctors gave her three to five years to live: an accurate prediction, based on medical treatments available at the time.

Soon after her diagnosis, researchers announced major breakthroughs that changed her life, and the lives of other myeloma patients. Regular infusions Gerry receives have kept her cancer in remission. She’s also had a stem-cell transplant. In this August 31, 2007 interview from the Today Show, she describes how these new medications have made myeloma a chronic disease, rather than the death sentence it once was, not long ago.

(Click on the picture, below, to view the video on the Today Show website...)


Geraldine Ferraro’s cancer battle

The same thing is true, now, of many forms of lymphoma – including the indolent form I now have. There is no cure, but there is hope for a much longer life.

This is true, at least, for those who have medical insurance. As Gerry comments in the Today Show interview, sitting in a chemotherapy-infusion chair: “What bothers me is that what’s available to me is not available to every person who has cancer in this country – and, it should be.”

She tells a story, in the Newsweek article, about a fellow myeloma patient she was talking to on the phone. This man, a retired teacher from Montana, has inadequate insurance:

“[He] explained he was feeling terribly fatigued. When I asked him about his hemoglobin levels (you get to know about this stuff when you have a blood cancer), they were startlingly low. ‘Oh, my God, they're not giving you Procrit or Aranesp or one of the other anemia medicines?’ I asked. ‘No. I can't afford it. It costs $800 a shot,’ he said. He explained that he'd had to devise a cheaper alternative to manage the anemia. ‘I wait until my hemoglobin gets down to seven [that's really low] and then I go to the hospital and get a transfusion, which only costs $50,’ he said.

Is that what this country should be doing to its people? And yet, it happens all the time.”

It does happen all the time – despite what the advocates of small government will tell you.

“Are there no poorhouses? No workhouses? No prisons?” asks the unrepentant Ebenezer Scrooge, at the beginning of A Christmas Carol. “Are there no emergency rooms?” ask those who oppose any move in the direction of universal health care. Well, here’s a guy who – out of economic necessity – is using the emergency room in precisely the way they recommend, only for him it’s like playing Russian roulette. Each time he does this, he’s gambling that his hemoglobin level will fall low enough to get him a transfusion, but not so low that it will kill him first. One day soon, he could very easily wait too long before going in.

I grew up being told I was lucky to have been born in the United States of America, and not in any other country. Until recently, I believed that. The simple facts of this man’s case prove that he, at least, would have been luckier to have been born in Canada, or Britain, or some other country with universal health care. At least he could get the medicine he needs, and avoid playing Russian roulette with blood transfusions.

I say that with a heavy heart, because I consider myself a patriotic American. Yet, until we can marshal the collective will to get our nation’s leaders to stop talking about the health-care funding crisis and do something about it, frightening stories like his are going to continue to be told.

Run, Gerry, run. Keep running, to represent us all in your battle to hold the politicians’ feet to the fire!