When Public Figures Get Sick

Listen to this 'Talk of the Nation' topic

eedwards.jpg

Elizabeth Edwards, preparing to testify in front of the Senate Health, Education, Labor and Pensions Committee, about the challenges and opportunities on finding cures for cancer. Alex Wong/Getty Images hide caption

itoggle caption Alex Wong/Getty Images

The first time the illness of a public figure really made an impact on the American public happened on the evening of Sept. 24, 1955. That was the day that President Dwight Eisenhower had a heart attack. Unlike previous presidents who had been struck ill — Woodrow Wilson in 1919 for instance — Eisenhower released detailed information about his condition to the public (although it was a very controlled release).

By today's standards (which we'll discuss below), not much came to light. But at the time, it stunned people to learn that their president was so sick, and many Americans wanted to know why it had happened. Suddenly Americans were learning that the food that you eat — and the cigarettes you smoke — could make you very sick indeed.

These days, with 24/7 media, the illness of a public figure quickly becomes a major story — for instance, the news this week that Sen. Ted Kennedy (D-MA) has a brain tumor. Another recent example is Elizabeth Edwards' battle with breast cancer.

Often these illness can lead to a great deal more information about a particular illness making its way into the public mind share. Past examples include; the late-Mickey Mantle's liver replacement and what it did for raising awareness of organ donation; "Magic" Johnson's battle with HIV/AIDS reduced the stigma associated with the disease; and the late President Reagan's battle with Alzheimer's made more people aware of it's debilitating effects.

Great good can come out of this otherwise tragic situation. But sometimes so many conflicting stories about these illnesses can sometimes muddy the situation, rather than clarify it. For instance, the debate in the media this week about how long people live after getting the kind of brain tumor inflicting Kennedy. Cable news networks eagerly trot out medical experts to declare a disease is either this or that. Few discuss the actual nuances of the situation.

On today's show we'll talk to Dr. Barron H. Lerner, a historian and professor of medicine and public health at Columbia University Medical Center, whose recent book When Illness Goes Public: Celebrity Patients and How We Look at Medicine, examined this very issue. Elizabeth Edwards will join us, too. What questions do you have for them?

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Celebrity illnesses are generally much more exciting than commoner's illnesses. Take Ted Kennedy's brain tumor for example. Newscasters said that he would be released from the hospital and sailing is sail boat by the weekend. He'll probably sail to some tony beach town where other celebrities will surround him. When my friend, a commoner, got a brain lesion there were no cameras, no sail boats, no celebrity well-wishes, just a plain old death sentence. That's why celebrities illnesses surpass commoners. Cheers to celebrity illness.

Sent by Sue | 2:15 PM | 5-22-2008

hmmm...thought's and prayers? i'd much rather have a decent health insurance program or hmo.

Sent by T. Emerson Coleman | 2:18 PM | 5-22-2008

I was told as a child that Albert Einstein and I share the same form of dyslexia. Although I have struggled greatly though out my education (just finishing my masters degree in architecture) I have always held on to the optimism (whether it is true or not) that Einstein struggled as-well. Sometimes there is no cure, but how great that we struggle together.

Sent by Alex | 2:20 PM | 5-22-2008

Health insurance made me hide a prior presumptive diagnosis of a serious illness so that I would not be denied employment or other insurance. Even my other doctors (the ones who didnt diagnose it) were not told about it.

Sent by Gloria | 2:33 PM | 5-22-2008

A year ago, when I was diagnosed with Stage IV ovarian cancer, I experienced the immediate urge to keep it totally secret. That urge was short-lived. I quickly decided that it would take far more energy to keep a secret than to share the information and I needed all my energy to heal. It was a good decision. People often have very valuable help to offer. Allowing them to do that is helpful to me and to them. By the way, I'm doing well.

Sent by Joan Weiss | 2:33 PM | 5-22-2008

What role does HIPAA, the federal health information privacy act, play in cases of celebrity illness. As a physician, I am legally accountable for disclosing patient information. Are any of the talking heads who prattle on about celebrities with various illnesses liable for their disclosures?

Sent by Kelly | 2:35 PM | 5-22-2008

I agree with Sue. Look at Brittany Spears for example. I live in Baltimore City, MD. We have many derranged-types hanging around by Hopkins and the VA hospital probably suffering from bi-polar disorder or schyzophrenia. They mumble and shout and wear winter coats in summer by bus stops and in the street, but they are not nearly as interesting as Brittany. She drives a Mercedes, wears wigs, chooses odd company, makes herself bizarre -- all for us to watch. Another case where the celebrity's illness beats the pants off of the joe-lunch pale and sally-office worker's illness.

Sent by Mike K, Baltimore, MD | 2:39 PM | 5-22-2008

While celebrity illness can help publicize a little-known disease, many people suffer in obscurity simply because no one famous has been diagnosed with that illness. Funding, and the subsequent research, is dependent on publicity, not science.

And to echo another comment, health care for everyone, regardless of means and social status, would be really nice. Please sir, may I have some more life?

Sent by Richard Posner | 2:40 PM | 5-22-2008

I would have been interested in hearing more about alternative medicine including prayer (focused meditation). Chemotherapy is a process of almost killing someone in order to kill the cancer. This seems intuitively wrong. What about Natropaths all the millions of natural herbs that major pharmaceuticals cannot patent and make huge amounts of money producing. I wonder why we do not hear about natural cures? Hmmmmmm .

Sent by Waid Johnson | 2:41 PM | 5-22-2008

Three years ago I was diagnosed with stage 111 ovarian cancer. I did not keep it a secret to family or friends. However, after 3 yrs and much support I still found it necessary to keep my illness from recently rekindled friends. Why? I just want to know what it feels like again, to just enjoy someone's company without the cloud of this illness shortening my ability to talk or dream about the future. A real future. It's a small luxury and I'm able to enjoy it with old friends I see
no more than a few times a year.
At some point I may want to share the info, but for now, it's a real lift, talking like all my tomorrows go beyond
tomorrow.

Sent by Linda | 3:02 PM | 5-22-2008

I have Stage 4 breast cancer with mets to the lungs and bones and nerves. I had two years of chemotherapy, and it was losing effectiveness. I turned to the internet and it saved my life (no, I'm not selling anything). I am following Dr. Johanna Budwig's protocol using flaxseed oil and a special diet, with help from a Yahoo cancer support group, and some additional detoxing tools.

My point here is that many times people keep getting chemo until there is no hope left, when there are valid alternatives out there. I did not know about these options myself until I'd been through years of chemotherapy, and started searching for another solution. I would like for Mrs. Edwards, Senator Kennedy, and everyone else with cancer to know that there are valid options to standard medical treatment. People may not decide to turn to the alternatives first, but they could be kept in mind for down the road, if needed. Oncologists don't always tell the patient when chemotherapy will no longer help, because they like to give the patient hope. While understandable, they really should give the patient the chance to search elsewhere while there is still a window of opportunity. My own oncologist hinted it to me, when he said, "I know what you want, and I can't do it for you." He did me a favor by saying that, because I started thinking outside the box.

I am now healing, my cancer markers keep going down, I feel great, and I don't have to put up with the horrible side effects of chemotherapy.

Sent by Wanda | 3:06 PM | 5-22-2008

I've known people with cancer who have gone the conventional allopathic treatment route and died and those who have lived. I know others who have combined alternative treatments or used alternative treatments alone for cancer and died, and those who have lived. Isn't time we stop this belief that the allopathic medical system has all the answers? That it is the doctors and their medical treatments that cure? Please! There are many, many factors that effect the outcome of any treatment. For certain, allopathic treatments for cancer wreck the immune system. But, what are they doing to nourish or build it? In my experience, nothing. Was it the laetrile that led to Steve McQueen's death? Maybe. Maybe not. The fact is, we never know why some people live and others die. We must realize that the medical establishment does not have all the answers (that there are other resources that like to keep from us - i.e., mentioning the dangers of traveling abroad for treatment or the dangers of alternative care. What do they know about alternative care!? Really!), and that, in fact, they often they are conducting dangerous experiments with our bodies. While some conventional medical treatments are amazing and helpful (i.e., emergency care, research)remember this is an art, not a science. Basically, it is a crap shoot. I've seen it firsthand.

Sent by brianne | 3:07 PM | 5-22-2008

Elizabeth Edwards brings a wealth of knowledge and a unique perspective to cancer, healthcare, and the privacy of health information. Today on TOTN, Ms. Edwards and her callers provided several interesting perspectives. Ms. Edwards was nearly cut off mid-sentence at the end. I am a loyal fan of TOTN and was deheartened, if not embarrassed by this. 'Damage minimal' until I returned to my radio an hour later to a TOTN segment seemingly dedicated to praising Bett Midler (I have nothing against Bett Midler). I learned more useful information in 10 minutes of listening to Ms. Edwards than I did 20 minutes of hearing various callers tell Ms. Midler how wonderful she is, and her, in turn, promoting her show. This is public radio! Talk of the Nation, no less... what's with the meaningless celebrity interviews??

Sent by Susan Roberts | 4:19 PM | 5-22-2008

I felt engaged in the conversation about Public Illness and me, but I felt distanced. I deal with traumatic brain injury and all the benefits that come with it. The conversation in America about Brain Injury and PTSD/Depression/Bi-polar Disorder and the like, give me the hope that I may be taken seriously when I make a statement that I am disabled with brain injury, PTSD with chronic depression. I look presentable enough, so the the "barista" still gets upset with me when I get confused. I feel as though the media discussion regarding PTSD minimizes the condition. The poor soldiers. I can see it in there eyes and the media is persistent and the audience is compassionate, but the the more it is talked about the more I feel it is minimized. The acronym, PTSD is becoming meaningless. I think the physicians I see will be enlightened when I meet them professionally ( I need to change physician's a lot)but I hear the groan of "hear we go again". The media is great and the professionals are doing great things, but we remain misunderstood. I am not a person that cannot be taken care of in a 30 minute appointment. It takes years and most physicians don't have time.

Sent by Brian | 9:04 PM | 5-22-2008

Listening to TOTN on my way home from work yesterday sparked a conversation with my mother about her diagnosis of Pysudomyxoma Periotini -PMP- nearly three years ago. While I didn't think the celebrity connection featured in the piece applied to her situation -other than her letting her "public" in our local area in on her struggle- I was surprised in the middle of the discussion to learn that Audrey Hepburn was diagnosed with the same disease. It not only reminded me that while my mother has had no dicernable advancement of her PMP tumors in the last year she lives with this every day and it doesn't matter who you are, it can happen to everyone.

Sent by Amelia McClellan | 6:07 PM | 5-23-2008