Can Twitter Save Your Life?

I recently heard about a local 8-year-old girl with leukemia whose parents are looking for a bone marrow donor match for her. Because the girl, Natalie, is Asian, a match (i.e., someone whose cells are similar enough to the girl's cells for her immune system to accept the transplant) is most likely with an Asian donor.

There is an ongoing shortage of ethnic minority donors of bone marrow and stem cells for blood cancer patients (stem cells are extracted from the donor's blood in an outpatient procedure). As a result, Caucasian patients are about twice as likely to find a donor match as minority patients.

I looked at the site for the girl, www.hopefornatalie.com, and looked at a related bone marrow donation site, www.dkmsamericas.org, then tweeted the information to spread the word, because you never know who might be able to help. And perhaps Natalie's case will encourage more people to register as potential bone marrow donors so that patients with blood cancer will have a larger group of donors to search within the National Marrow Donor Program. Donating bone marrow, if you're the right match for a patient, is relatively simple and painless.

To spread the word and find a donor, Natalie's parents created a web page, Facebook page, and Twitter account, using social media to its fullest extent; I heard about Natalie on a Yahoo listserve. Natalie's website includes links to volunteer, register, and make donations, and a media contact number.

Thinking about Natalie's case, however, I am haunted by a  number of questions. First of all, I wonder about the families who need bone marrow or blood donors for their ill children but who don't have the tech savvy, access, or language skills to look for much-needed donors through social media.

These families can't cast a wide net looking for donors as Natalie's family has. They are less likely than Natalie's family to find a donor who can save their child. On the other hand, these families do benefit from the additional donors in the national registry who sign up when they hear about children such as Natalie. But to what degree does the surge of new registrants created by cases such as Natalie's mitigate this digital divide?

A while ago, when Twitter was quite new, I stopped to chat with the father of my daughter's classmate at pick-up time. He worked at Twitter, and I asked him what exactly Twitter was supposed to be used for - griping about your day? planning a night out with friends?

Now I know that Twitter is not just a tech toy. It played such a big role in documenting the Iranian election in 2009, for example, that the State Department asked Twitter to change its maintenance schedule in order to keep Twitter online during the protests. Twitter, Facebook, blogs, and other online media are, in fact, extremely powerful for spreading the word about any number of different causes -- political, medical, or personal. Powerful, that is, for people who have access to the technology.

Reframing the Health Care Debate

As health care reform lurches forward uncertainly, with the special election of Massachusetts Senator Scott Brown giving Republicans enough votes to block the passage of the reform bill in its current form, The New England Journal of Medicine has published a very thoughtful Perspective called "American Values and Health Care Reform."

The term "values" has been a battering ram for both political parties for so long, each side claiming that their values are better than the other's, that the word itself makes me a little nauseous. But Thomas H. Murray, Ph.D., the author of the Perspective, offers a different interpretation of the word. He argues that the values that Americans like to think they hold, such as liberty, fairness, and responsibility, are not applied evenly throughout the health care system. This inconsistency is an ethical, moral and financial loss for all Americans.

Do we really value liberty, Murray asks, when so many people are shackled to jobs they dislike because they need access to employer-sponsored health insurance? For example,

Under our current system, a young entrepreneur with a brilliant idea for a new business, a creative vision that can create jobs and wealth, can't necessarily follow that vision: if this person has a job at a large firm that provides good health insurance and has a child or a spouse with a chronic illness, the aspiring entrepreneur's freedom to pursue his or her dream is severely limited by the "job lock" imposed by our current patchwork of health insurance. The catch-22 of insurance underwriting for preexisting conditions is likely to make insurance unaffordable or unattainable for such a family on its own.

Similarly, Congress passed the 1986 Emergency Medical Treatment and Labor Act so that anyone in need can get emergency medical care, whether or not they have insurance, demonstrating that Americans feel responsible for others in dire circumstances. "Yet our achievements do not always live up to our values," Murray writes. "Consider the 20,000 people each year who, according to the Institute of Medicine, die for want of health insurance."

Americans need to see health care as a common good that benefits us all, not an individual choice. Murray writes that we need to pitch in to finance health care for everyone, and work together to make health care more efficient and effective.

Maybe calmer heads will prevail if we reframe health care reform as a reflection of our best instincts as Americans, rather than a political fight or a battle between individual and community rights.

Is the H1N1 Vaccine Safe?

Is the H1N1 vaccine safe? I've heard this question a lot since I began promoting the book I co-authored, The Complete Idiot's Guide to Vaccinations. Young adults and mothers of young children tend to ask me about the H1N1 vaccine, because they are weighing the risks and benefits of getting vaccinated.

Modern vaccines are extremely safe. Problems such as bacterial contamination of vaccines, a serious threat several generations ago, has been largely eliminated through the use of preservatives and improved packaging. Many older vaccines have also been reformulated to reduce the risk of side effects (such as the old DTP vaccine, and the earlier rotavirus vaccine for children).

The H1N1 vaccine is made in the same way as the seasonal flu vaccine. The viruses that cause the flu are grown and biologically weakened in chicken cells, until they are still strong enough to create an immune system response in people, but too weak to cause the disease in a healthy person. Then the weakened viruses are either:

• killed and used in the seasonal or H1N1 flu shot (the best choice for people with weakened immune systems or other risks), or 
• kept alive and used in the seasonal or H1N1 flu nasal spray vaccine (the best choice for certain people with healthy immune systems).

The seasonal flu shot has been available since the middle of the last century; the nasal spray flu vaccine was licensed in the United States in 2003.

The CDC tracks health problems that might be linked to vaccines with the Vaccine Adverse Event Reporting System (VAERS). Both health care providers and the general public can report health problems that occurred after a vaccination to VAERS. Researchers monitor VAERS, looking for patterns of problems with a vaccine. If a pattern does occur, then they do further research within the Vaccine Safety Datalink (VSD), a database containing the health records from eight managed-care organizations across the country.

What have they found since they have been tracking the H1N1 flu vaccine? The CDC's Dec 11 Morbidity and Mortality Weekly Report (MMWR) found that the risk of serious side effects (adverse events) from the H1N1 vaccine is about the same as the risk for the seasonal vaccine. In a word: low. From October through November 2009, VAERS data showed 82 adverse events per million doses of H1N1, and 47 adverse events per million doses of seasonal flu vaccine.

Still, the rumors are flying about the H1N1 vaccine: that it can cause Gulf War Syndrome or Guillain-Barre syndrome, that it contains Agent Orange, and so on. The website FactCheck.org's "Inoculation Misinformation" article provides a good overview and rebuttal of some of the questions that have cropped up in emails and online about the H1N1 vaccine.

Take Your Eyes Outside

Since I am nearsighted myself, I was intrigued by a recent article in New Scientist that looked at the causes of myopia (nearsightedness). Myopia rates have skyrocketed around the world, explained author Nora Schultz in "Generation specs: Stopping the short-sight epidemic," affecting 80% of the population in some Asian countries and 30% to 50% of the population in Western countries.

Researchers once thought that reading and other "near work" might cause myopia, but they have been unable to prove this definitively. Schultz writes that they have found that myopia is less common in children who spend more time outdoors, though.

Why is this? It doesn't seem to matter whether or not the children are getting any exercise outdoors, she explains. Instead, researchers believe that exposure to bright natural light might slow eyeball growth, preventing a child's eyes from growing into a shape that can cause myopia.

Focusing on far-away objects outdoors also might help prevent eye problems. Children who live in urban areas have fewer opportunities to look out over long distances than those who live in the country. This might contribute to high rates of myopia in urban areas.

So there is it, yet another argument to get outside and play in nature: it's good exercise for your eyes. A recent family trip we took to Marin County's Point Bonita Lighthouse was certainly a good example. To get there, we had to hike down a long trail that dropped off to crashing surf far, far below. We stopped at the edge of the trail a few times to peer down at the tiny fishing boats making their way toward the Golden Gate Bridge. The trail ended at a long, dark tunnel blasted into the cliffside.

We came out of the tunnel, squinting at the light, into a small gathering area with a group of other people. From there it was a short trip over a weather-beaten footbridge that the park rangers warned could only hold two people at a time, below which the surf crashed and spit into the rocks. I held my daughter's hand and walked carefully across (trying not to think about how much or how little money the National Park Serivce spends on repairs and maintenance each year), only looking forward at the cottage-sized lighthouse glued to a hunk of rock ahead of me because I really didn't want to look down.

Sure, there was a lot of bright natural light, and plenty of long scenic views from the lighthouse. But with the heights, the damp tunnel, the waves clawing at the cliff, and the rusty footbridge, I don't think I'll be back. I think our next trip will be to a nice peaceful meadow - inland.

YouTubilicious: Science and Entertainment

This week, I attended a press preview of the new digital show, Journey to the Stars, at the California Academy of Sciences' Morrison Planetarium (billed as "the largest all-digital planetarium in the world") - the show officially opens on September 26. The stunning images, of the Orion Nebula (see picture), the Milky Way, and the spiderweb paths of satellites that criss-cross the earth, were created based on the latest astronomical data.

As the show zoomed through images of the solar system, showing how it might have looked 13 billion years ago and ending with a projection of the sun's demise 5 billion years from now, portentous music swelled in the background. The narrator on this galactic tour? Whoopi Goldberg.

I like Whoopi Goldberg; she's smart, funny, and sassy, as was her planetarium narration. But it's hard for me to imagine the stand-up comedien, The View co-host, and star of Sister Act seriously pondering the origin of the universe or the magnetic fields of Saturn.

On the other hand, a low-tech, soporific, Carl Sagan-esque explanation of how stars are formed might not be the right approach to teaching science to the public. I remember visiting Chicago's Adler Planetarium in Chicago with friends in high school many years ago - bright future alumni of MIT, Brown University, and the United States Naval Academy, among other schools - and watching them doze off one by one in the darkened room as the image of Orion the Hunter was superimposed over the constellation of Orion's Belt on the ceiling.

Science doesn't have to be boring, especially with the new technologies available today. If Pixar studios can give a desk lamp a sparkling personality with computer animation, why can't science be presented in a more engaging way? Maybe a little more entertainment is just what the doctor ordered. With that in mind, here are my favorite, toe-tapping music videos about my two most recent obsessions: swine flu (novel H1N1) and health care reform.

Dr. John D. Clarke, FAAFP, won a recent public service announcement contest sponsored by the department of Health and Human Services with his "H1N1 Rap". Who knew that HHS could be so hip?




In response to data that ranked the United States 37th in the world for the quality of its health care, Paul Hipp wrote the rock-and-roll song "We're Number 37", proving that you really can write a song about anything.

Making Politics Palatable to Moms

A while ago, I signed up to receive emails from the political group MomsRising. The organization advocates for progressive, family-friendly policies such as paid family leave, expanded health care coverage for children, and better-quality child care options. I support these causes, but I was hesitant to join MomsRising because they are linked to MoveOn.org.

I remember well when MoveOn ran a notorious full-page ad in the New York Times in 2007 that criticized the war in Iraq by making fun of General Petraeus' name. I am constantly telling my children not to tease other people (or each other), but MoveOn had no problem with name-calling. Should an organization that uses ridicule to advance its objectives provide political leadership to mothers?

And what does it mean, exactly, to organize mothers into a political entity advocating for improvements in child health and other family-friendly causes? Are American mothers that cohesive ideologically - or that easily lead? If they are, I'm not sure I want them to be.

When MomsRising - or other political or social organizations - send emails summarizing an issue and include a simple "click here to send a letter to your senator" button, I get a bit suspicious. If I take the time to do some research, the topic is inevitably more complex than it first appears. Furthermore, MomsRising tries to make political involvement fun, such as decorating a onesie to send to local politicians, or dressing in a superhero cape to advocate for health care reform - an approach akin to making smiley-faces out of your child's vegetables in order to persuade her to eat them. They forget that mothers are adults, not children.

I'd like to see less drama and more thoughtfulness from an organization that advocates for mothers and families, particularly if they're going to talk about such a fraught issue as health care reform. Moms (and Dads) need to flex their critical thinking skills. It's following without thinking, believing rumors and hearsay about health and health care instead of facts and reports, that gets everyone in trouble in the first place.