For years, the parents of children suffering from an implacable genetic disorder called Canavan disease dutifully packed off their blood and tissue samples to Dr. Reuben Matalon, a researcher at Miami Children’s Hospital. These shipments were an altruistic, volunteer effort by a devastated group of people — their own children were dead or dying, but they hoped to prevent the births of more children with the disastrous, inevitably fatal brain disease.
In 1993, their donations paid off when Matalon, parsing the families’ DNA, was able to identify a series of gene mutations on chromosome 17 that appeared to indirectly cause the disease, which has mainly affected Ashkenazi Jews. His work raised hopes that Canavan would go the way of Tay-Sachs, a related illness that has nearly disappeared in the Jewish population since couples began routine screening for Tay-Sachs in the early 1970s.
But the Tay-Sachs screening program, apparently, belonged to a kinder, gentler era in medicine. In November 1998, Miami Children’s Hospital announced plans to strictly license its patent on the Canavan gene. Not only did Miami Children’s demand that clinicians pay a $25 royalty (eventually lowered to $12.50) each time they performed the test; it also put a cap on the number of tests any academic lab could do.
The hospital’s stringent licensing agreement is part of an alarming trend in biomedical research. Some biotech companies, universities and even hospitals are seeking to recoup their costs quickly by patenting discoveries that many believe shouldn’t be patented at all. The patent license disputes threaten to close off research and clinical applications of some of the biomedical discoveries that Americans have paid billions to enable.
Some of the leading genetics labs in the country would not accept Miami Children’s licensing terms and as a result had to stop testing for Canavan disease. “It’s a wretched contract and we refused to sign it,” says Debra Leonard, director of the molecular pathology laboratory at the University of Pennsylvania hospitals in Philadelphia. Shocked patient groups and scientists could only watch in dismay as bickering lawyers put a squeeze on information they’d worked long and hard to generate.
“We gave our DNA and that of our children to help develop testing and prenatal diagnosis. We sent our blood and skin samples to a doctor at Miami Children’s Hospital,” says Dr. Judith Tsipis, a Brandeis University biologist whose son, Andreas, died of Canavan disease in 1998 at age 22. “Is it right that they use our genes — given to help others — in a way that restricts access and increases cost to testing?
“It’s shocking,” she says.
“My understanding from the hospital was we needed to file the patent just so I could work with the gene myself,” says Matalon, who has since moved to the University of Texas hospital system, where he continues to work on Canavan disease. “I had nothing to do with their licensing decision and I got no penny from any patent.”
Canavan disease is one of a growing number of conditions in which patent fights have intruded into genetic medicine. Ninety percent of the 150 U.S. clinical genetics labs in a recent survey reported having withheld tests because of onerous patent claims. Genes for early-onset Alzheimer’s and breast cancer are among the most common DNA sequences saddled with restrictive licenses.
Doctors whose clinical practice involves devising means to detect disease-causing genetic mutations are being told they can only perform such tests under licensing agreements that are often so strict the doctors’ institutions refuse to sign them.
“This is my medical practice. I can’t do what I was trained to do, and I spent a long time training to do it,” says Leonard, who is also president of the Association for Molecular Pathology.
The problem will only grow with the approval of thousands of additional gene applications currently pending before the U.S Patent and Trade Office. “This is just the tip of the iceberg,” says Leonard. The conflicts over genetic testing — the first clinical application of the Human Genome Project — are probably just an opening skirmish in a multisided war for control of the information, drugs and therapies that may arise from the genome discoveries.
Thanks to robots, supercomputers and brainy scientists, the government-led genome project is expected this year or next to finish its sequencing of the estimated 100,000 genes in human DNA. But the mapping of the human chromosomes is really just the start of a new kind of biological understanding. Although scientists now know the DNA sequences of many human genes, they don’t understand how most of them work.
While the rest of us await the integration of these molecules into an intelligible language of life, scientists, businessmen and the government squabble over what value to assign the millions of information snippets.
James Watson, who won the Nobel Prize in 1953 for discovering DNA’s double-helix structure, resigned as the first director of the NIH genome institute in 1992 in a dispute over whether to patent DNA sequences that a scientist named Craig Venter had discovered. Venter also quit the NIH and formed a gene sequencing partnership with William Haseltine, a Harvard AIDS scientist. Haseltine and Venter now lead competing biotech firms that are racing a government-led consortium to decode vast quantities of human DNA.
Haseltine, Venter and other scientific entrepreneurs have submitted patent applications on millions of bits of DNA, many of whose function isn’t clearly understood. The patent office recently raised the bar of knowledge it requires before issuing patents on genes, but Francis Collins, Watson’s successor, worries that premature claim-staking on the genome could end up snarling research in legal battles for years.
Using the sophisticated databanks, most of them designed and run by the government, genome-analyzing companies have described possible functions for about half the gene sequences discovered so far. John Doll, who heads the U.S. Patent and Trade Office’s biotechnology division, says his office will grant patents for genes when applicants can describe a plausible function for them based on computer searches.
A prime example was the patent awarded last month to Human Genome Sciences for a gene that codes for a protein involved in introducing the HIV virus into cells. When Haseltine filed for the patent in 1995, he didn’t know the function of the gene, but was savvy enough to guess it might be a cell membrane receptor. In the meantime, AIDS researchers doing painstaking science uncovered the actual role of the gene. The awarding of the patent — worth millions if the gene is used to create AIDS drugs or vaccines — infuriated these scientists as well as patient groups that supported their research.
“Doesn’t it bother you,” Collins asked Doll during a conference in Washington on Thursday, “that your standard would allow patent protection for roughly 40 percent of human genes, and yet if you ask any working scientist what percent of human genes they know the function of, you’d get, maybe 2 percent?”
“Everybody’s filing for these patents,” said Doll. “Not just the Incytes of the world; zillions of universities are taking the same approach.”
“I don’t doubt it for a second but it doesn’t make me feel any different,” an exasperated Collins responded. “When there’s a gold rush, a lot of people go to California.”
Other scientists are less restrained in their attacks on the biotech industry. “The idea of patenting DNA sequences is abhorrent to me, but in particular, the way it’s being done now is intellectually dishonest,” says Robert Nussbaum, a molecular biologist at NIH.
Nussbaum, who works on Parkinson’s disease, said the kind of gene patent applications that Doll’s office has decided to approve are likely to be shaky in their claims. Even if correct, he said, such claims are based on searches of public databases and “are being done on the backs and shoulders of research funded by the public and charitable foundations. It doesn’t seem right that these sequences should be taken and locked up for the purpose of profit making.”
Doll points out that hard work has never been a requirement to win a patent from the U.S. Patent Office, which generally tries to be as friendly to patent applicants as possible. “We don’t care how you find out something new, only that you’re the first to find it,” he says. And some biotech officials say that scientists are simply bitter at the fact that technology is transforming the manner in which biological information is gathered.
Officials at Incyte, a Palo Alto, Calif., company that sells its genome information to more than two dozen pharmaceutical and biotech companies, like to point to a discovery made last year by CV Therapeutics, a small California biotech company. Using Incyte’s databases and a few simple experiments, scientists from CV Therapeutics were able to identify a set of genes involved in Tangier disease, a heart ailment discovered among people living on Tangier Island in the Chesapeake Bay. CV’s discovery took two months, but it was listed by the American Heart Association as one of the top 10 discoveries of 1999.
“Medical research is increasingly a matter of using technologies to gather a bunch of pieces of information,” says Lee Bendekgey, general counsel for Incyte. “It’s really accelerating things and that’s what matters. And when people make discoveries like that, they deserve both public accolades and rewards.”
In the 1980s, in a more primitive era of genetics discoveries, it took Francis Collins several years to isolate and clone the cystic fibrosis gene. At the time it was one of the more remarkable chapters in genetics research. The University of Michigan, where Collins made the discovery, holds the patent on the gene. As it happens, Michigan doesn’t charge researchers a dime to use it.
Of course, patent holders want people to use their inventions — if no one uses them, they don’t get paid. And intellectual property lawyers say that when the patents on the human genome get sorted out, relevant ones will be bundled into packages that can be licensed to researchers and doctors in useable form — for a price.
When the Human Genome Project began, ethicists were primarily worried about whether knowledge from the genome would be used for genetic discrimination, or to create genetically enhanced children or eliminate the genetically unfit. But such concerns may be beside the point if the technology is too expensive for anyone but the rich.
Those who care for the genetically vulnerable appear most aware of this paradox. Judith Tsipis’ son Andreas never learned to walk, talk or feed himself. But he could think — and he had a good sense of humor, she says. Asked the difficult question of whether Andreas’ birth should never have taken place, Tsipis shrugs off facile answers.
“Andreas was my child and I loved him dearly. He was loved and cared for superbly well but he still had a difficult life, especially toward the end. Would I have wanted him to be born? I can’t answer that. But I’m working very hard for screening so that families have all the options, and one option is an abortion. The key thing you need is information, education, and the availability of testing.”
“If patents hinder research,” she adds, “it will make it harder for people to develop cures for these diseases.”
This piece originally appeared on
AlterNet.
Almost two full years after the BP oil spill, a panel of experts gathered at the 17th annual Tulane Environmental Law Summit, to present the continuing impacts of the BP Oil Spill. That spill began with the April 20, 2010, explosion of the Deepwater Horizon drilling unit used by BP 40 miles off the Louisiana coast. Eleven men lost their lives. The resulting spill of oil into the Gulf of Mexico stands as the largest oil spill in U.S. history and the second largest environmental disaster in this country to date besides the nearly decade-long Dust Bowl of the 1930s. Scientists at the summit presented recent photographs of shrimp with no eyes and fish with cancerous tumors born long after the gulf was declared “safe” for fishing.
It turns out that testing water and fish flesh under the surface oil after the spill was not very telling about long-term impacts as oil and water don’t mix and the chronic, toxic impacts were delayed until long after BP was put in charge of the “cleanup.” When BP sprayed chemical dispersants containing a slew of toxic heavy metals including arsenic, the oil didn’t magically disappear. It sank into the sediment. Disturbingly, the allowable levels set by the government for the toxins in our seafood are based on health impacts for a 176-pound adult eating less than two medium shrimp a day. The testing is for one chemical out of a crude oil mixture containing thousands of chemicals. No synergistic effects are considered. This in no way protects children, fetuses, people who weigh less than 176 pounds or anyone who eats seafood on a daily basis like the folks here on the Gulf Coast.
Dr. Andrew Whitehead, Ph.D., associate professor, Department of Biological Sciences, Louisiana State University, who is studying the BP spill and has reviewed much of the scientific studies of the Exxon Valdez spill, explained that stock declines of species may take several years to develop as reproduction is impacted in successive generations and across species. The Exxon Valdez spill is now known to be responsible for the decline of many species, including marine mammals, marine birds, and fishes such as pink salmon and herring. Though we have a take on the immediate acute impacts of the BP spill on animals caught in the oil, the chronic ultimate impacts of the BP spill are still unknown. But we do know that the killifish, the most abundant forage fish for the bigger fish in Gulf Coast marshes, are being affected. Fish from oiled marshes show signs of direct toxicity and reproductive impairment. Dr. Whitehead’s experiments involving exposures to oiled sediments, done in collaboration with colleague Dr. Fernando Galvez, show that killifish embryos are taking longer to develop or don’t hatch at all. They are being born with malformed hearts and hearts that may not function properly when they mature. And as the impacts from the spill on the fish bioaccumulate and propagate across generations, liability is harder to prove without good and strategic scientific study that sadly is harder to fund.
But some impacts are being felt now, especially for sediment dwelling seafood. Current reports from fisherman up and down the coast are startling. The oyster harvest for 2010 was the worst in more than four decades and oystermen continue to report catches down as much as 75 percent. Crab catches are in steep decline. Brown shrimp production is down two-thirds. And the white shrimp season was even worse, leading to descriptions of “worst in memory” and “nonexistent.” This from the region that before the spill provided 40 percent of the nation’s seafood.
Dr. Patricia Williams, Ph.D., Diplomate of the American Board of Toxicology, Associate Professor, Coordinator of Toxicology Research Laboratories, Pontchartrain Institute for Environmental Sciences, University of New Orleans, spoke at the summit about what she sees as a failure to properly assess the impact of the spill on seafood and on human health. She said:
In 1996, the National Oceanic and Atmospheric Administration acknowledged that direct measurement of tissue for PAH (polycyclic aromatic hydrocarbon) concentrations generally does not provide a useful indicator of exposure of fish to PAHs from petroleum spills. Regardless, an extremely expensive seafood testing program was launched using this method. Testing included only 13 PAH parent compounds out of 200 PAHs present in crude oil. PAHs act on each other resulting in greater toxicity than expected from a single PAH (synergism). The synergistic nature of the PAHs were ignored in interpretation of the results. Additionally, the Levels of Concern were calculated for a 176 pound individual. This does not address toddlers and children or the developing fetus and placental transfer. The public was not warned of these deficiencies in the seafood testing program.
Dr. Williams explained that “PAHs are endocrine disruptors that interfere with the normal blood-borne hormones (e.g., estrogen and testosterone) that are responsible for the regulation of reproductive and developmental processes. Only very low amounts of chemicals are needed to disrupt the normal endocrine balance of both humans and animals. Evidence of reproduction imbalance is seen in the second generation of white shrimp in the 2011 harvest. Shrimp were harvested with defective eye stalks, pleopods, and pereiopods. Such anatomical defects are occurring in the markedly reduced white shrimp population in the Gulf and warn of endocrine dysfunction that could result in the loss of the species.”
Furthermore, “The heavy metals known to be present in crude oil are being ignored in the testing of seafood. Metal toxicity can produce neurobehavioral abnormalities in sea life such as: alterations in avoidance or attraction responses; critical swimming speed; changes in social interactions (e.g. aggression), reproduction, feeding, and predator avoidance; food foraging with reduced feeding ability; loss or orientation in swimming and changes in schooling behavior. Heavy metal testing in BP Oil clean-up workers has documented increased arsenic levels in 24 hour urine specimens.”
Finally, Dr. Williams warned that “The future chronic health effects from consumption of contaminated seafood and biomagnification along the food chain are yet to be realized in both sea life and humans. Chronic effects may take years to present and may elude an analysis of their causal origins. ”
On the second day of the summit, a settlement between private plaintiffs and BP was announced in the press. This settlement does not resolve the government cases, either civil or criminal, against the responsible parties. But the settlement of the private case raises the question whether the government prosecutions will be resolved without a trial and without jail time for executives ultimately responsible for the deaths of 11 workers and severe and ongoing environmental and economic impacts on the region. The summit attendees were abuzz with speculation about what will happen in the federal and State of Louisiana cases.
In Louisiana, petroleum is king. This state is the third largest producer of petroleum in America, Louisiana is responsible for more than one-quarter of the nation’s natural gas production, and Louisiana is the third leading refiner of petroleum in the country. In addition, the state makes over 600 petroleum products making it the second in the nation in primary production of petrochemicals. The 20-mile stretch on the Mississippi from New Orleans to Baton Rouge known as “The Cancer Corridor” pumps out one-quarter of the chemicals made in America. Louisiana leads the United States in release of toxic chemicals into the environment. The seven-parish industrial corridor has the highest density of petrochemical industries in the nation and possibly the world.
All this money in petroleum has a huge impact on politics in Louisiana, just as it does on a national and international level. It’s probably impossible to get elected to any Louisiana office without courting petroleum dollars and making campaign promises to that industry. A visit to the petroleum friendly website for the Louisiana Department of Natural Resources reveals the following section titled “Legacy Liability Reform.”
This “Legacy Liability Reform” is less likely to ensure any protection for Louisiana’s resources or its citizens than it is to assure petroleum companies that Louisiana and its resources are theirs for the taking. The reform is code for “don’t worry about liability because immunity for really bad stuff is all part of the deal for investing in Louisiana.” Oh, by the way, the Louisiana courts have been very protective historically of petroleum interests as well.
From the 1950s on, drilling for oil and gas on federal lands and waters has produced the second largest source of revenue for the federal government besides taxes. This has led to a rather cozy relationship between the federal government and those corporations that extract petroleum here. Let us not forget that since the inception of the Minerals Management Service (now renamed the Bureau of Ocean Energy Management, Regulation and Enforcement to emphasize what it should be doing) has been involved in numerous scandals. For example, in 1990, MMS employees were linked to prostitution, and in 2008 the Department of Interior’s inspector general reported that MMS employees were engaged in both drug use and sexual activity with employees from the very energy firms they were to be regulating. This wasn’t just the foxes guarding the chicken coop, but the foxes actually in bed doing lines of coke with the chickens.
Clint Guidry, president, Louisiana Shrimp Association, spoke at the summit about the political ramifications of the spill and the unlikelihood of real justice coming from the government case. Mr. Guidry had worked for BP earlier in his career like so many Louisiana men have. He knows intimately both the oil industry and the fishing industry. When the spill happened, Louisiana shrimping was devastated. First, Guidry lobbied for jobs for all the shrimpers when the fisheries closed. Then he fought for job site safety for the workers and community residents impacted by the cleanup. Guidry’s role became that of witness to the harms on fisherman response workers when they began to suffer from being exposed to aerial application of the chemical dispersant and being downwind from burn sites of the surface oil. For instance, on May 26 seven shrimpers from the offshore response crew were admitted to West Jefferson Hospital with chemical poisoning. Two days later, after Obama’s May 27 visit to Grand Isle where he was photographed picking up tar balls, two more shrimpers were airlifted to West Jefferson Hospital for emergency medical treatment, also for chemical poisoning. Guidry met with the Occupational Health and Safety Administration, the U.S. Coast Guard, the National Institute for Occupational Health and Safety, and with other government representatives from the local to the federal including Secretaries Napolitano and Salazar and U.S. EPA Administrator Lisa Jackson.
Mr. Guidry still has the following unresolved questions:
- Why did we allow people who caused the oil spill to be in charge of the cleanup? Everything they did was to limit liability, not to protect the environment, the resources or the people.
- How could the government announce on Aug. 5, 2010, that suddenly 75 percent of the oil had disappeared? Corporations run this country and they operate under the Golden Rule: Who holds the gold makes the rule.
- According to statements made by Louisiana Coastal Protection and Restoration Authority Chairman Garret Graves, BP is choosing the direction of the environmental damage assessment. Shouldn’t the Oil Spill Recovery fund be administered independently so it could fund real scientists like Dr. Whitehead?
- Oil companies are good at covering up spills and sinking the oil with additional chemicals, but they are no good at cleaning up spills. If we are allowing these companies to drill in the Gulf, shouldn’t they be required to have the technology to prevent disasters and to clean them up? They don’t.
- Even after the largest loss of life and oil, no laws have been changed. Eleven men are dead but I don’t believe anybody will go to jail. The government is the keeper of the record of the criminal investigation and if they settle the case, the public will never see that information. If the record is not made public in a trial, how do we learn from this spill?
- I’m a third generation fisherman. We were the first environmentalists because if you don’t take care of the environment, it doesn’t take care of you. I love wildlife. The spill has devastated wildlife. What price do you put on a dead dolphin?
- The head of Minerals Management Service at the time of the BP disaster came from big oil. She was fired by Obama and MMS was split up but no one else was fired. Is that enough house cleaning? Can these people keep us safe when they have failed in the past?
As the federal government and affected states including Louisiana move toward trial or settlement, we should all be asking these questions.
How will the government cases be resolved? Potential penalties of more than $17 billion for environmental violations remain on the books for BP. Peter Lehner, executive director of Natural Resources Defense Counsel writes in his blog, “How the remainder of the case pans out says a lot about the future of energy in this country. Will the government allow BP, and the rest of the oil industry, to continue business as usual with nothing more than a slap on the wrist? Or will the company be put on trial and held accountable for its actions? Will the penalties be severe enough to make the oil industry clean up its act? BP reported profits of $21.7 billion in 2011, nearly 3 times the estimated cost of its settlement with private parties in the Gulf.”
And one question looms even larger than the spill, the resulting legal cases or even BP profits: How can we establish a separation between the oil industry and our government?
It’s an accepted – and often much appreciated – fact of modern American life that there aren’t too many places you can smoke. It’s been a long time since anybody was allowed to light up on an airplane, in an office, in most bars and restaurants. In New York City, you’re not even legally permitted to smoke in many outdoor public places. And in Orange County, you can’t light up on your own patio or balcony. Well, at least you can still come smoke in your own home, right? I said, right?
Not so fast, Don Draper.
On Wednesday, the city of Elk Grove, Calif., began discussions to ban smoking from rental apartments. Unsurprisingly, the California Apartment Association and the Rental Housing Association of Sacramento Valley are opposed to the smoker-repelling measure. The Sacramento County Tobacco Control Coalition, meanwhile, is urging the city to become the first in the county to enforce an apartment-smoking ban. Several complexes in Elk Grove already have privately issued residential smoking bans — bans that are echoed in apartment complexes and co-ops around the country.
But the possibility of making a smoking ban a city issue is a thorny issue, one that permeates the public and private sectors like a freshly lit Newport on wool fibers. Cigarette smoke unquestionably and unavoidably stinks. It’s also a bona fide health hazard, especially for the very young, the elderly and people with compromised immune systems. And it’s not like your neighbor’s smoke stays neatly in your neighbor’s two-bedroom. As local resident Mimi Dixon, who lives in a senior facility, told the city council recently, secondhand smoke “comes in through the walls, the plumbing, through the lighting. It comes through everywhere.”
As someone who’d prefer her own home not smell like an ’80s frat party, I’m not thrilled when the heady aroma of tobacco (or other smokable substances) wafts into my apartment. And if my building were to suddenly issue an all-points ban on smoking, it would bother me only to the extent that our awesome, eternally puffing super would probably have to move. But I was more aromatically offended when we had a neighbor who had cats and a penchant for never cleaning the litter box. True, secondhand cat box stink isn’t a health issue, but how serious a threat is a smoker when you’re not under the same roof?
Left to the needs and desires of individual landlords, co-operative shareholders and tenants, smoking bans can potentially raise the value of a property and increase the quality of life for everybody. But when it becomes a city mandate about what you can do with a legal substance in your own home, it’s an encroachment on the privacy of everybody, not just smokers. And that shouldn’t make anybody feel like breathing easier.
“My clients don’t know,” he told me. How could they? My neighbor Edward (some names and some identifying details have been changed) doesn’t look sick. In many ways, he isn’t. He’s a dapper, graying-at-the-temples man with two young children, a consulting business — and a recurring cancer for which he’s currently facing another round of treatments. It’s hard enough drumming up business in this economy, Edward says. If a potential client’s choice comes down to the healthy 30-year-old and the middle-aged man with a tumor, well, who would you choose? So he presses on in secret, cleverly arranging his business schedule around doctor visits and scans. He’s in the cancer closet.
One of the first things you have to deal with when faced with a life-altering illness is the decision about whom you’re going to tell, and how. When I learned I had malignant melanoma a year and a half ago, I told my editor before I told my family. (OK, I was on a deadline at the time.) Two days later, I told the whole world in a cover story for Salon. Two months ago, Boing Boing writer Xeni Jardin live tweeted her first mammogram – and her stunning diagnosis of breast cancer – to thousands of followers. For some of us, the diagnosis is where we find our voice. For others that kind of candor isn’t an option, for either professional or personal reasons.
While a friend was going through breast cancer treatment a few years ago, few in our circle knew that her mother was facing it at the same time. Five years later, Ginger, a figure skating coach, says that “I knew if I told anyone, my students would immediately start looking for another coach.” Instead, she covered up surgery with a story of a vacation to Maine, and sandwiched months of afternoon chemo and radiation treatments in between early morning and evening coaching sessions – and weekends traveling with her team. “It took everything to get through it,” she says now. “There were times I was so exhausted I couldn’t see straight. A couple of times I had to leave the ice because I was so sick.” But she says she’s never regretted her choice to keep silent. On the contrary, sticking to her rigorous work schedule and maintaining the demeanor of health was “what got me through.”
In the midst of a health crisis, the routines of a career — the sense of purpose and obligation it provides — can provide motivation and escape, something that isn’t easy to pull off when everybody’s concerned about your condition. Chris, a doctoral student and teacher at an academic medical center, didn’t enjoy having his students popping in to check on him during his treatment after a lung transplant for his cystic fibrosis. He’s since switched his care to a different facility. Now that he’s no longer on oxygen – “when you can’t conceal a blessed thing” — he’s also discreet with his peers. “I don’t want people deciding for me what I’m able to do,” he says. “I’m pretty good at determining that for myself.” He knows first- and secondhand how damaging honesty can be. When his wife asked for a scheduling change around one of his procedures, her boss relieved her of her duties, telling her that “he’d decided she wouldn’t be able to handle her responsibilities.” Pretty bold of him to come out and say it. The ease with which employers can “restructure” or blame a termination on popular culprits “inconsistency” or “absenteeism” make it easy to conceal how often people with chronic conditions and their caretakers lose their jobs over them — and even harder to determine how great a role illness plays in hiring practices.
Thanks to our often punitive American healthcare system, the consequences of illness can be severe far beyond the illness itself. Linda, who was diagnosed with MS four years ago, says her friends know her condition but she rigorously keeps it from her co-workers. “It’s bad enough to live with this disease not knowing how it will affect me,” she says, “but I am terrified that it could also affect my employment prospects.” For Linda, like far too many of us in this country, “the thought of losing my job and thus my healthcare is probably my biggest nightmare.” The Patient Protection and Affordable Care Act doesn’t take full effect for another two years, when no one will be able to be denied coverage based on preexisting conditions. Currently, you can apply for a “high risk pool” if you’ve been uninsured for six months. That’s a lifetime for a person with a serious illness, and for those of us on ongoing treatments and drugs, an unfathomable expense.
There are other reasons beyond the fear of career repercussions for keeping illness a secret. Nobody wants to be viewed as an invalid, or the one who might be circling the drain. And as cancer blogger Katherine, who has metastatic breast cancer, says, “It’s often easier not to challenge people’s assumptions than to explain.” Linda agrees that “I am perfectly capable of working and living a mostly normal life. However, there is still an antiquated view of MS in our society, and many people automatically assume that once you are diagnosed, your next step is a wheelchair.” And Ginger notes that even in this day and age, when you can’t swing a cat without hitting a LIVESTRONG bracelet, “There’s such a death sentence that people put on cancer.” The reality of illness is that there are plenty of days when you’re going through the rigors of treatment and its side effects, that you just don’t want to be the official spokesperson and explainer for This Is What My Disease Looks Like.
Just as difficult as being pitied, though, is the risk of finding yourself scorned for a condition beyond your control. Bette, who has autoimmune disorders, says, “I’m very Type A, never miss a day of work or class or a deadline, even if that means having to go throw up in the bathroom in between meetings with clients. There’s a perception that people with autoimmune issues are weak, fragile, or delicate, which are characteristics I really try to avoid, especially as a woman. There’s also a ton of stigma about fibromyalgia. Someone in my office the other day actually made a comment about how so many women say they have fibro for sympathy, which strengthened my resolve to keep my conditions to myself. ” And Cheryl, who was diagnosed with Type 1 diabetes after an initial misdiagnosis of Type 2, says, “Many people think I ate my way to diabetes, since I’m overweight, but that’s really not the case. I feel like my food choices are always silently (and sometimes not silently) judged. Look at the backlash that Paula Deen suffered. My reaction to that controversy? How awful that another person has to have this disease, no matter how she got it. It also feels somewhat embarrassing to be ‘sick’ — like a personal failure that one of my organs doesn’t work properly.” Now, however, she says, “I decided to become more public about it,” because among other things, “I’d rather do a shot in the middle of a crowded restaurant than in some dirty bathroom stall.”
As Katherine advises, “Every individual will have their own reaction and coping mechanism” for dealing with long-term conditions and sudden, sharp reversals of fortune. We all grapple with the physical changes and scheduling nightmares, with balancing our privacy and our secrecy, with the desire to share and the longing to be seen as our healthiest, strongest selves. We know that when we say we have cancer or we have diabetes, we have cystic fibrosis or lupus we’re HIV-positive, that you will not look at us or treat us the same way ever again. We just don’t know whether we’ll be met with compassion or a pink slip, with support or with judgment. There’s so much about illness we can’t control. That’s why we care so much about the one thing we always still have power over: the way we get to talk to you about it.
We haven’t even turned the page on the controversy over contraceptives, health care and religious freedom when another thorny one arises involving personal conscience and public health. A flurry of stories over the past few days coincided with seeing a movie that inspires more than passing interest in their subject.
Steven Soderbergh’s film “Contagion” came out a few months ago and was inexplicably and completely frozen out of the Oscar nominations. But it is the most plausible experience of a global pandemic plague you’re likely to see until the real thing strikes. With outstanding performances from an ensemble cast that includes Matt Damon, Kate Winslet, Gwyneth Paltrow and Laurence Fishburne,”Contagion” is stark, beautiful in its own terrifying way, and all-too-believable. The story tracks the swift progress of a deadly airborne virus from Hong Kong to Minneapolis and Tokyo to London — from a handful of peanuts to a credit card to the cough of a stranger on a subway. Rarely does a film issue such an inescapable invitation to think: it could happen; that could be us. What would we do?
With “Contagion” making such a powerful impression, for several days news articles seemed to keep popping up about contagious disease and the conflict between religious beliefs and immunization. There was nothing new about the basics: All 50 states require some specific vaccinations for kids, yet all of them grant exemptions for medical reasons – say, for a child with cancer. Almost all of them grant religious exemptions. And twenty states allow exemptions for personal, moral, or other beliefs.
According to the February 15 edition of The Wall Street Journal, a number of pediatricians are dropping families from their practices when the parents refuse immunization for their kids. “In a study of Connecticut pediatricians published last year,” the paper reported, “some 30 percent of 133 doctors said they had asked a family to leave their practice for vaccine refusal, and a recent survey of 909 Midwestern pediatricians found that 21 percent reported discharging families for the same reason.” They add:
By comparison, in 2001 and 2006 about 6 percent of physicians said they “routinely” stopped working with families due to parents’ continued vaccine refusal and 16 percent “sometimes” dismissed them, according to surveys conducted then by the American Academy of Pediatrics.
But some parents still fear a link between vaccinations and autism, a possibility science has largely debunked. Some parents just want to be in charge of what’s put into their children’s bodies, as one West Virginia politician puts it. And some parents just don’t trust science, period — a few have even been known to fake religion to avoid vaccinating their kids. So there are many loopholes. But now seven states are considering legislation to make it even easier for mothers and fathers to spare their children from vaccinations, especially on religious grounds.
In Oregon, according to a story by Jennifer Anderson in The Portland Tribune, the number of kindergartners with religious exemptions is up from 3.7 percent to 5.6 percent in just four years, and continuing to rise. This has public health officials clicking their calculators and keeping their eye on what’s called “herd immunity.” A certain number of any population group needs to have been vaccinated — 80 percent for most diseases, 92 percent for whooping cough – to maintain the ability of the whole population — “the herd” — to resist the spread of a disease.
Ms. Anderson offers the example of what used to be called “the German measles” – rubella. All it takes are five unvaccinated kids in a class of 25 for the herd immunity to break down, creating an opportunity for the disease to spread to younger siblings and other medically vulnerable people who can’t be vaccinated. If you were traveling to Europe between 2009 and 2011, you may remember warnings about the huge outbreak of measles there, brought on by a failure “to vaccinate susceptible populations.”
Here in the United States, several recent outbreaks of measles have been traced to pockets of unvaccinated children in states that allow personal belief exemptions. The Reuters news service recently reported 13 confirmed cases of measles in central Indiana. Two of them were people who showed up to party two days before the Super Bowl in Indianapolis. Patriots and Giants fans back east were alerted. So far, no news is good news.
But this is serious business, made more so by complacency. Older generations remember when measles killed up to 500 people a year before we started vaccinating against them in 1963. The great flu pandemic of 1918 killed ten times more Americans than died in the Great World War that ended that year and took the lives of as many as forty million globally. Our generation was also stalked by small pox, polio, and whooping cough before there were vaccinations.
In a country where few remember those diseases, it’s easy to think, “What’s to worry?” But as the movie “Contagion” so forcefully and hauntingly reminds us, the earth is now flat. Seven billion people live on it, and our human herd moves on a conveyer belt of perpetual mobility, so that a virus can travel as swiftly as a voice from one cell phone to another.
When and if a contagion strikes, we can’t count on divine intervention to spare us. That’s when you want a darn good scientist in a research lab. We’ll need all the help we can get from knowledge and her offspring.
This 2011 photo provided by Donald Waters shows a fish harvested from the Gulf of Mexico with unusual lesions and infections. Two years after the Deepwater Horizon rig exploded and sank, touching off the worst offshore spill in U.S. history, the latest research into its effects is starting to back up those early reports from the docks: The ailing fish bear hallmarks of diseases tied to petroleum and other pollutants. (AP Photo/Courtesy Donald Waters) (Credit: AP) 
(Credit: iStockphoto/2StockMedia) 
(Credit: jcjgphotography and Monkey Business Images via Shutterstock) 
Kate Winslet in "Contagion" 
