Shirley Temple Made It Easier to Talk About Having Breast Cancer

If a former film star held a press conference today about having breast cancer, she would hardly make history by doing so. Unless she were exceptionally young or famous for her gorgeous body, a celebrity’s cancer announcement might receive less attention, in itself, than scrutiny over her treatment decisions. Parade lists dozens of famous individuals who have “come out” with a breast cancer diagnosis.

Shirley Temple in 1944 (Wikimedia image)

Shirley Temple in 1944 (Wikimedia image)

Yesterday, Shirley Temple Black died at the age of 85 years. In the fall of 1972, the former actress had a mastectomy to remove a tumor from her left breast. She was 44 years old. Within days after surgery at Stanford Hospital in San Francisco, she spoke to the media about her condition. She advised other women not to be afraid to see a doctor if they noticed a breast lump. Newspapers around the country reported on her surgery, and advice. “There is almost certain recovery from this form of cancer if it is caught early enough,” she said. Her intention was to encourage other women to not be afraid of seeking care for breast cancer.

In that era, her message was one of empowerment. In the early 1970s, many women were terrified of having a malignancy. If they felt a breast lump, they might wait months or years, until it grew through to the skin, eroding it, or spread to other body parts, eventually causing pain or death. The message of early detection, which some experts now question, was considered an imperative by almost all authorities – surgeons, medical oncologists and public health experts.

I must admit, I’ve never been a fan of Shirley Temple’s “baby burlesk” style of cuteness, curls and twirls. I acknowledge what historians say, that as a girl she delivered smiles and good cheer when she appeared in Depression-era films. Some of her most famous scenes, like singing “On the Good Ship Lollipop” in Bright Eyes, or dancing with Mr. Bojangles (Bill Robinson) in The Little Colonel, do bear a certain charm, or interest, through time.

Shirley Jane Temple was born on April 23, 1928. She retired from acting at 22 years, around the time she married Charles Alden Black. In the 1950s she entered the political realm, raising money for the Republican Party. In the 1960s, she conveyed support for the war in Vietnam. While Nixon was President, she served as a delegate to the United Nations and ambassador to Ghana. She held positions in the administration of Gerald Ford and, later, under George H. W. Bush as ambassador to Czechoslovakia. She was, most certainly, a woman with whom I might have had some serious disagreements at a dinner table.

What I choose to remember about Shirley Temple is that she lived for 41 years after having a mastectomy for breast cancer in 1972. She spoke openly about her medical condition, and encouraged other women to seek medical care if they noticed a lump. In doing so, she may have saved more than a few lives. And she made it easier for us, today, to talk about breast cancer, options, and long-term effects of treatment.

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Learning About Lou Gehrig, his Diagnosis, Disability and Pride

I can’t resist mentioning that today I caught part of another old baseball flick in the gym. Pride of the Yankees, on TCM, features Gary Cooper as Lou Gehrig. Sam Wood directed this 1942 MGM classic in which Babe Ruth appears, briefly in cameo, as Babe Ruth. A Times reviewer, writing after its July 1942 release, complained that the film didn’t include enough baseball, nor sufficient drama until its end. That may be true. But your athletically-challenged author was moved by this film, and stopped by some of the scenes depicting how information was conveyed in that era, about the star’s declining health.

movie poster

movie poster, 1942 film “Pride of the Yankees”

I learned about Lou Gehrig in medical school. Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig’s Disease) is a progressive and serious neurological disease that tends to affect a person’s voluntary (“motor”) muscles, such as those of the arms, legs and face. The CDC maintains a national registry for the condition, which is of unknown cause and, to the best of my knowledge today, remains on the shortening list of incurable conditions. The NIH estimates that 20-30,000 people are living with ALS, and that some 5,000 or so are found to have this condition each year in the United States. It typically affects, or “strikes” – as it’s almost universally metaphored, people in their forties or fifties.

(Forgive me the verb, this post is both serious and personal.)

A former colleague, whom I admire and will always remember for what he has taught me about immunology and even more by his working through illness, has ALS and has continued contributing for the long time, over 20 years, that I have known him. What enables some people with illness, i.e. patients, to keep contributing in their field of expertise is, first, their wanting to keep working. But it also requires a sensitive and encouraging environment – a workplace that allows people with knowledge, who become disabled or limited by health concerns, to work as best they can.

I learned that Lou Gehrig was a New Yorker. He was born to German immigrants in Yorkville, near where I live in Manhattan. According to his biography in the Baseball Hall of Fame, the left-hander was born in June 19, 1903 and died on June 2, 1941, a few weeks shy of what would have been his 38th birthday. He was called the Iron Horse and played first base for the Yankees. In the movie, it takes Gehrig a while to realize, or admit, that he can’t play baseball – that he’s stumbling and struggling to even hold a bat, or run or walk. Once the athlete acknowledges his limitations, he is treated kindly and generously by his manager, teammates and fans. At first, the doctor in the Scripps Clinic doesn’t want to tell him the truth about his condition. But Gehrig wants the numbers, the statistics, facts. Finally, after Cooper, playing Gehrig, asks him if it’s “three strikes.” The doctor answers that, yes it is. The patient understands his meaning. No one in the room can pronounce the words “amyotrophic lateral sclerosis,” but Gehrig gets the picture. The patient doesn’t want to tell his wife but, as these things usually go, she figures it out.

The Yankees and Gehrig’s manager try to keep his illness a secret, but after he gives up his spot on the roster, it becomes progressively evident that something is seriously wrong. One nugget in the film is an interaction with what might be considered a peer patient. Early on, Gehrig encounters a boy who can’t walk, and offers him encouragement. Later, once Gehrig’s condition has become evident, the young man comes to tell him thanks, and to show Gehrig he’s gotten better, by not giving up. But the boy becomes tearful and appears not to enter the stadium. It seems his hero’s deteriorating condition is too much to watch.

On July 4, 1939, Gehrig gave a speech before a packed Yankee stadium. He thanked his teammates, coach, sportscasters, athletes of other teams, fans, his parents and his wife, and concluded, famously, that he was “the luckiest man on the face of the Earth.”

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For MLK Day – On Giving Blood, and Maybe Being the Match

January is National Blood Donor Month. For those who can give, it’s never too late; the need is year-round.

A few years back, I wrote on the value of donating blood, as many will do today to honor the birthday of Dr. Martin Luther King, Jr. When I was practicing hematology I wasn’t aware of this practice, which now seems integrated with nationwide MLK National Day of Service events. The Orlando Sentinel published an article linking blood donation with MLK on January 14 1988.

Here are some resources for people who’d like to know more about giving blood:

Give Your Blood To Save a Life, Poster (American National Red Cross), U.S. National Archives

Give Your Blood To Save a Life, Poster (American National Red Cross), U.S. National Archives

The American Red Cross provides information on when and where to donate blood, as well as helpful instruction on the process of giving for first-time donors.

The AABB, formerly the American Association of Blood Banks, covers transfusions and related therapies.

America’s Blood Centers – a large network of non-profit community blood centers.

The New York Blood Center – a terrific local resource for my neighbors, a pioneer in blood banking and resources for patients worldwide.

For those who’d consider bone marrow donation, the National Marrow Donor Program helps patients with leukemia and other conditions find matching bone marrow donors.  The agency provides, also, financial assistance to some who can’t afford needed transplants.

Today, I learned that Robin Roberts, the GMA anchor who has been through breast cancer treatment and, subsequently, a bone marrow transplant for a rare blood disorder (MDS), has launched a public service campaign to encourage blood and marrow donors. Each of us can only do what we can. That she is alive and putting her name behind the drive, telling her audience what they can might to do to aid others, is heartening.

As someone who has benefited from the generosity of healthy donors, and the kindness of strangers among those, thank you!

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Don’t Judge Her! An Essay on Angelina Jolie, BRCA, Cancer Risk and Informed Decision-Making

Angelina Jolie at Cannes in 2011 (Wikimedia Commons, attribution: Georges Biard)

Angelina Jolie at Cannes in 2011 (Wikimedia Commons, attribution: Georges Biard)

Before this morning, I never wondered what it’s like to walk in Angelina Jolie’s shoes. Like many, I woke up to the news – presented in the form of an op-ed in the NYTimes – that one of the world’s most beautiful and famous women recently had bilateral mastectomies to reduce her risk of developing breast cancer.

It turns out the 37 year old actress carries a BRCA1 mutation, a genetic variant that dramatically ups her risk of developing breast and ovarian cancers. Her mother, Marcheline Bertrand, died of cancer at the age of 56 years. Jolie would have been 31 years old when her mother died.

As Jolie tells it, doctors estimated her risk of developing breast cancer to be 87 percent. As she points out, the risk is different in each woman’s case. As an oncologist-journalist-patient reading her narrative, I can’t help but know that each doctor might offer a different approximation of her chances. It’s likely, from all that Jolie has generously shared of her experience and circumstances, that her odds were high.

“Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness,” Jolie wrote in today’s paper. To take control of her fate, or at least to mitigate her risk as best she could upon consultation with her doctors, she had genetic testing for BRCA and, more recently, decided to undergo mastectomy.

The decision was hers to make, and it’s a tough one. I don’t know what I’d have done if I were 37 years old, if my mother died of cancer and I had a BRCA mutation. There’s no “correct” answer in my book, although some might be sounder than others –

I know physicians who’ve chosen, as did the celebrity, to have mastectomies upon finding out they carry BRCA mutations. And I’ve known “ordinary” women – moms, homemakers, librarians (that’s figurative, I’m just pulling a stereotype) who’ve elected to keep their breasts and take their chances with close monitoring.  I’ve known some women who have, perhaps rashly, chosen to ignore their risk and do nothing at all. At that opposite extreme, a woman might be so afraid, terrified, of finding cancer that she won’t even go to a doctor for a check-up, no less be tested, examined or screened.

What’s great about this piece, and what’s wrong about it, is that it comes from an individual woman. Whether she’s made the right or wrong decision, neither I nor anyone can say for sure. Jolie’s essay reflects the dilemma of any person making a medical choice based on their circumstances, values, test results and what information they’ve been given or otherwise found and interpreted.

How to conclude? Mainly and first, that I wish Ms. Jolie the best and a speedy recovery after surgery. And to thank you, Angelina, for raising this issue in such a candid fashion.

As for the future, Jolie’s decision demonstrates that we need better (and not just more) research, to understand what causes cancer in people who have BRCA mutations and otherwise. My hope is that future women – children now –needn’t resort to, nor even contemplate, such drastic procedures to avoid a potentially lethal condition as is breast cancer today.

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On Sheryl Crow’s Report that She Has a Meningioma, and Singing Loud

This morning CNN fed a headline: Sheryl Crow: ‘Brain Tumor is a Bump in the Road.’ This concerned me, not only because I’m a huge fan, but because in 2006, she began treatment for breast cancer at age 43. “Singer-songwriter Sheryl Crow says she has a brain tumor,” says the first line of the CNN story. I was concerned. It seemed liked she’d been getting a little bit closer…to feeling fine.

Fortunately, the LATimes and People magazine got Crow’s story right. Their headlines, and text, emphasize the benign nature of Crow’s newly-diagnosed condition, a meningioma. Most meningiomas are benign, local expansions of the cells that line the brain and spinal cord. These growths occasionally cause neurological symptoms. Some patients have surgery to relieve or avoid complications of these non-malignant growths, but many don’t need intervention. When I was an oncology fellow I learned that meningiomas were relatively frequent in women with breast cancer, but that association turned out to be untrue. The “lesson” back then was that if a scan shows a brain mass in a woman with breast cancer, you shouldn’t assume it’s a brain met, because meningiomas were not rare in women with a history of breast cancer. According to the NCI website today, meningiomas are more common in women than in men.

Singing ‘Rock and Roll,” on top of a piano

Cancer scares aside – I’m glad that Sheryl Crow’s brain mass is benign, and that she can keep on singing if she chooses. I’ve seen her twice in concert, and she’s amazing. I have several favorite songs of hers, but the most memorable moment from a performance I’ve seen was when she got up on top of the piano at Radio City and sang Led Zeppelin’s Rock and Roll. I wish I could do that! She’s a powerful woman, for sure.


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Two Faces of Pancreatic Cancer

Early this week I was saddened to hear of a former colleague’s death from pancreatic cancer. Dr. Ralph Steinman, a physician-researcher at the Rockefeller University, received a Nobel Prize for his work on the innate immune system. For many, news of Ralph’s death at 68 years arrived synchronously with word of his award.

Yesterday we learned that Steve Jobs, Apple creator and leader, died at 56 years from a neuroendocrine tumor of the pancreas. The tech-based, Twitter-type tributes reveal the breadth of this man’s influence on our world.

These two men faced completely different forms of cancer in the pancreas. This news underscores the importance of pathology in cancer diagnosis and treatment. For a patient to make an informed treatment decision, which might be to decline treatment, a patient needs to know what kind of cancer they have, what is the prognosis, and how might therapy change the course of the particular illness.

Jobs had a neu­roen­docrine tumor. According to the NCI, islet cell tumors of the pan­creas are quite rare, with esti­mates of between 200 and 1000 new cases per year. These can be dis­tin­guished from other cancers by special stains and mol­e­cular tests. Just months ago, the FDA approved two new drugs for treatment of neuroendocrine tumors of the pancreas: Afinitor (Everolimus) and Sutent (Sunitinib).

This kind of cancer can arise in almost any body part, but it’s most commonly found in endocrine (hormone-secreting) organs. In the pancreas, it can develop from islet cells that manufacture hormones such as insulin. Symptoms may occur if the tumors secrete active hormones, with effects elsewhere in the body, or if they cause pain by expanding and pressing on nearby nerves, vessels or ducts. These tumors tend to grow slowly and the prognosis is relatively good; doctors may advise some patients to hold off on treatment until symptoms occur.

The usual form of pancreatic cancer is of the exocrine cells, those that produce and secrete digestive enzymes into the bile duct and small intestine. According to the American Cancer Society, there are over 44,000 new cases of pan­creatic cancer yearly in the U.S. It tends to occur in the elderly and is slightly more common in men. Cig­a­rette smoking is one of the few certain dis­posing factors; the causes are largely unknown. The prognosis for this kind of pancreatic disease remains poor, on average. Standard treatments, according to the NCI, include surgery, radiation, chemotherapy and palliative care.

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Considering Steve Jobs, Medical Diagnoses and Privacy

Yesterday morning I wrote a short post on By evening, news broke that Apple founder and CEO Steve Jobs resigned from his position, presumably for reasons of his health.

What’s public, by Jobs’ decision, is that he had a relatively good, typically slow-growing kind of malignancy in the pancreas, a neuroendocrine islet cell tumor. He informed Apple employees by email about his diagnosis in 2004, when he was 49 years old. Since then he’s had a liver transplant. Possible complications of that surgery, or the tumor itself, have led to considerable speculation. But little is known about the details of why he took medical leave in January and is stepping down now.

In a published letter to the Apple Board and Community, he wrote yesterday: “I have always said if there ever came a day when I could no longer meet my duties and expectations as Apple’s C.E.O., I would be the first to let you know. Unfortunately, that day has come.”

The letter was “short and classy,” in David Pogue’s words, and I agree. I respect Jobs’ decision to keep the details of his medical condition private. That’s the thing – and where this is post is heading.

When public figures are open about their illnesses, it can be helpful, instructive and even necessary. For example, if a political figure, say Fidel Castro or Hugo Chavez or Dick Cheney, with considerable power develops a cancer or has a stroke or a heart attack or some other serious medical problem, the citizens have the right to know that the condition of the person they rely on has changed.

Sometimes it’s instructive to learn about famous people’s medical stories, as is illustrated in Barron Lerner’s book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine. Openness about breast cancer by women like Happy Rockefeller, Rose Kushner and more recently Elizabeth Edwards (to name a few among many) have helped women move forward, from being ashamed of having BC to understanding about what it’s like to live with the disease. They helped other women to understand this disease, through their generosity of personal stories and experience.

The problem is that in our culture there’s so much openness about medical conditions, individuals may feel compelled to tell what’s happening if they have cancer or a recurrence or some other unfortunate medical event. But not everyone wants to do so, nor should they feel obliged.

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Notes on Kris Carr and Crazy Sexy Cancer

I’m half-tempted to put down yesterday’s new NYT Magazine feature on crazy sexy cancer goddess Kris Carr. Her blog was one of the first I found when I started ML, and it was the most popular link on my fledgling site until I pulled it, fearful of somehow sponsoring a too-alternative oncology perspective.

But I give Carr credit, sincerely: Crazy Sexy Cancer is a lot more appealing a title than, say, Medical Lessons. I’d read CSC, for sure, if I had a new diagnosis or, maybe, if I were alone and bored or suffering from a condition like chronic fatigue syndrome or insomnia and hadn’t gone to med school. Even for people who really have cancer, letting loose and being attractive sounds, well, like a lot of fun.

Kris Carr has played her C-card like a Queen of Diamonds. You go, girl!

So this morning I pulled a hard-cover edition of Cancer: Principles and Practice of Oncology, 7th Edition (2005; Lippincott, Williams & Wilkins; edited by DeVita, Hellman and Rosenberg) off my shelf and looked up Carr’s stated disease, epithelioid hemangioendothelioma. Being the old-fashioned woman that I am, I read about EH* in print. Only then did I discover a handy, unopened CD housed inside the cover of the “oncology bible,” as we used to call this text.

the editors, 'Cancer: Principles and Practice of Oncology,' Lippincott

DeVita and his colleagues classified this condition as a vascular tumor in a chapter on sarcomas, in a section on tumors that develop in smooth muscle. Now, at risk of boring my readers with the medical “scoop” on this strange and sometimes benign-behaving sarcoma variant:

As its name implies, epithelioid hemangioendothelioma is an angiocentric vascular tumor with metastatic potential…These lesions may appear as a solitary, slightly painful mass in either superficial or deep soft tissue. Metastases to lung, regional lymph nodes, liver, and bone are reported. Another pattern is that of a diffuse bronchoalveolar infiltrate or multiple small pulmonary nodules. This entity has also been called IBVAT…can also arise in the liver, often presenting as an incidental finding or as part of a workup for mild elevation of liver enzymes or vague abdominal pain. Multiple liver nodules are the rule. Although these lesions can metastasize, they usually run an indolent course. Liver transplantation has been performed…

This sounds scary, sure, but the bottom line is that this tumor falls into unchartered oncology territory because they’re so rare. As reported in the Times piece there are only 40-80 cases per year in the U.S. A reference in the textbook, above, leads to a 1989 report in the American Journal of Surgical Pathology. In that study of 10 cases, the authors describe an unpredictable course for the disease.

As told by Mireille Silcoff in the magazine, EHE comes roughly in two forms: one’s aggressive and one’s not. So what the oncologist at Dana Farber suggested – that she go about her life, and “let the cancer make the first move” – was a reasonable strategy, one that allowed them (patient and doctor) to find out, over time, what would be the nature of her particular EHE.

Carr lucked out: She has the “good EH” as Larry David might say. So far, at least, she’s enjoyed a  productive, enterprising  life with cancer. From the Times:

She was given the diagnosis in 2003 and rose to prominence with a 2007 documentary called “Crazy Sexy Cancer.” She subsequently wrote two successful books— “Crazy Sexy Cancer Tips” and “Crazy Sexy Cancer Survivor” — about her peppy, pop-spiritual approach to her disease, and she soon became what she sometimes describes as a “cancerlebrity” or, at other times, a “cancer cowgirl.”

Now she has a blossoming business. At the cafe, she laid it all out while sipping a coconut-vanilla chai with soy. Her blog postings are being syndicated, she has pending sponsorship contracts, her weekend workshops are thriving and she has provided one-on-one coaching sessions on Skype ($250 for 90 minutes). She also just bought a farm — 16 acres complete with two houses, a barn, a meadow and a forest…

Am I jealous? Sure, maybe, some…But I’d be hopeless on a farm.

Besides, she hasn’t received chemo, had limb-removing cancer surgery, undergone early menopause…She looks fabulous! And with that kind of cancer, maybe so would you.

The issue is that Karr runs a well-connected wellness enterprise. She sells a way of life, David Servan-Schreiber style, with the message that you can beat cancer and be well if you nourish your body and mind with the likes of 21-day cleansing diets, juiced Whole Foods and meditation-enhancing mala bead jewelry.

The danger is that readers and customers/followers may believe that her current well-being is due to her lifestyle choices. And that some people with the malignant form of EHE, whose emails she may not read, struggle with feelings of inadequacy and defeat.

So I’ve learned from Kris Carr: For one thing, I don’t think I ever saw a case of EH and she, through her story, persuaded me to look it up. Second, she’s a smart business woman, who’s turned her life around upon a cancer diagnosis. Third, (am undecided, ideas?)

And I’m taking careful notes. Let’s leave it with that, for now.

*This author prefers to call epithelioid hemangioendothelioma EH, but most sources use EHE, so I’ll abbreviate as do the sources or use my own style, accordingly.

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Thoughts on the Death of Amy Winehouse

I feel compelled to write at least a short note on Amy Winehouse, a young woman who was found dead in her London apartment a few days ago. I don’t like to speak ill of the dead, but the truth is I was never a big fan of her music. I wasn’t fond of her highly-stylized hair or her weirdly-curved eyebrows.

Once, when I was 17, a friend told me he always tries to see the good in people, no matter how much they behaved disagreeably. Ever since he said that, it’s stuck. Today his words come through, in contemplating Amy Winehouse’s personality and short life.

I like her for her willfulness, even though it was so destructive.

Amy Winehouse, in 'Rehab' Video

Not a good medical lesson, for sure – or the message most people are telling their kids upon this “teaching moment,” but not everything I care for is just how it should be.

Yes, she should have gotten more help for her addictions. She needed it, that’s obvious. Family and friends, take note!… You can intervene and make a difference in a troubled person’s life.

But sometimes this happens in medicine, when you’re caring for a patient who smokes or drinks or smokes and drinks or does something else unhealthy, or in a family, or among friends – it’s not always so helpful to simply criticize and judge or lecture and point the person to the door.

So here’s another take: to identify something good in the person, and focus on that, and remember that.


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Gregg Allman Stars in Hepatitis C Awareness Campaign, with Merck

This weekend I learned that Gregg Allman, of the Allman Brothers, has hepatitis C. Not just that; he underwent a liver transplant last year for treatment of liver cancer. This information came my way via CNN, in a clip narrated by Dr. Sanjay Gupta. The cable TV crew filmed the old rocker in Macon, Georgia, at the band’s Big House.

Gregg Allman, performing in 2010 (Wikimedia Commons)

“He’s taping a public service announcement for the drug company Merck, about hepatitis C,” Gupta says 40 seconds or so into the clip (italics added, ES).

Hepatitis C stays silent in many carriers, meaning that most people with the virus are unaware of their infected state. The liver-infecting virus spreads most often by contaminated needles, sexual relations or transfusion of infected blood. Over time, the virus tends to cause liver damage and blood problems including anemia and, rarely, a condition called mixed cryoglobulinemia. In patients with long-standing hepatitis C, there’s a significantly elevated risk of developing liver cancer.

For two decades there have been a few, fairly effective anti-viral drugs available for hepatitis C. Treatment generally reduces patients’ anemia and liver disease, which leads them to feel better, and also reduces the risk of the long-term effects of infection, including liver cancer. Last month the FDA approved two new drugs for hep C: Victrelis (boceprevir), manufactured by Merck, and Incivek (telaprevir), by Vertex Pharmaceuticals.

While I have no formed opinion as to which of these new drugs is most effective or less toxic or more affordable in the long term for patients with hepatitis C, I do find it strange that Gregg Allman will be singing for Merck.

Eat a Peach (album cover)

The ethics of this are complicated: On the one hand, it might be a good thing for a music icon to raise public awareness about hepatitis C, so that more people at risk might get tested and then treated early before they develop severe liver disease and cancer, and would feel better. Gregg Allman is in a position to spread that message effectively: “If I have hep C, you might have hep C. Let me tell you about it…” (somewhat in the style of Magic Johnson, on HIV).

On the other hand, the notion of a post-transplant musician serving as the public’s primary source for information on hepatitis C seems preposterous, especially if he’s tied in with a pharmaceutical company with a stake in the matter. The situation is reminiscent of Sally Fields starring in commercials for Boniva, an osteoporosis drug.

You might ask yourself – and it’s not a trivial exercise – who can best, and objectively, inform the public about viral liver infections and the potential benefits of treatment: doctors? (we harbor biases; many have industry ties); patient peers? (Allman is a heightened example, but he’s hardly objective about this, either); newspapers? (or radio…

Will Allman’s be wasted words? (Hard to resist.) Really I’m not sure.

But I might go to Allman’s concert for the American Liver Foundation, at the Beacon Theater, scheduled for July 27.

All for now.




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