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10 ways healthcare reform might help people with disabilities

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What reform might do for a diverse, often overlooked group.

by Laura Newman

Healthcare reform discussions frequently center on the changes anticipated for the general population. But people with disabilities — about 56 million in the United States — are generally left out of the healthcare reform picture.

That absence is not unusual. According to Lisa Iezzoni, MD, Professor of Medicine and Director of the Institute for Health Policy at Harvard Medical School, discrimination against people with disabilities stretches back thousands of years in human history. They “have been discriminated against, stigmatized, institutionalized, and hidden behind closed doors,” she says. The disability rights movement, which began in the 1970s with deinstitutionalization, made progress through the passing of the Americans with Disabilities Act in 1990. Now, says Iezzoni, new health reform measures will offer people with disabilities important additional protections.

Healthcare reform has a variety of names, including the Affordable Care Act (ACA), the Patient Protection and Affordable Care Act (PPACA), and Obamacare. All of the terms refer to the same federal statute that President Obama signed into law on March 23, 2010.

Slideshow: 10 Ways Healthcare Reform Might Help People with Disabilities

Click first slide to view.

The diversity of disability

Disability can occur in any body system or several systems at once. Sometimes, a disability is clear, but other disabilities can be “invisible.” The two most common types of disability center on mental health or musculoskeletal disturbances, according to the Social Security Administration. But disability covers a huge spectrum from developmental and congenital conditions to sensory, cognitive, and emotional differences. With the aging baby boomer population and the link between disability and age, the number of disabled persons is expected to grow considerably in the coming years. Many of them will be women, who tend to experience higher rates of disability than men.

Data on the healthcare experiences of people with disabilities are limited, says Iezzoni. Much of it comes from national surveys. What researchers do know is that people in the disabled community experience relatively increased rates of poverty, low education, unemployment, domestic violence (including against disabled men), and physical and attitudinal barriers to a good quality of life.

Barriers to care

Barriers to care might be the most important obstacles, literally and figuratively, that a person with disabilities encounters. These barriers are among the issues that the new healthcare reform can address. In comparison with the nondisabled in the United States, people with disabilities receive fewer screening and preventive services. For example, women with disabilities have much lower rates of Pap testing and breast cancer screening and are less likely to be asked about reproductive health and contraception. “Part of this is attitudinal,” said Iezzoni, noting that doctors often behave as if sex and reproduction are just not part of the lives of people with disabilities.

Physical barriers also hinder access to care, and even medical equipment itself is often not adaptable for people with disabilities. For example, medical examination tables are very high, and women with disabilities may have difficulties getting onto one or maintaining the typical position for a pelvic exam. The same might also be true for mammography equipment.

“Women with disabilities are far less likely to get standard of care procedures for breast cancer and their outcomes are worse,” Iezzoni explains, referring to her own research. Among the disparities that health reform is intended to address are higher rates of mastectomy (complete breast removal), rather than lumpectomy (limited to removal of the tumor) for women with disabilities, lower rates of radiation therapy needed to produce disease-free survival, and higher death rates from breast cancer. Providing people with disabilities a chance to be more independent is also a pivotal issue for healthcare reform.

Trying to build in measures to improve access for people with disabilities is uncharted terrain, however, according to Iezzoni. That in itself might serve as an intangible reflection of what people with disabilities can encounter every day in a world without appropriate accommodations. It is also, though, terrain that the new healthcare reform might smooth out for the population with disabilities (see slideshow), lowering barriers and improving access … and quality of life.

Slideshow links Continue reading →

Oocytelarge

Old ovaries, new eggs? Hatching a debate

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Can adult women make new oocytes?

by Sarah C.P. Williams

For decades, biology textbooks have stated this as fact: “Women are born with all the eggs, or oocytes they will ever have.”1 The assumption — which shapes research on infertility and developmental biology, as well as women’s mindsets about their biological clocks — is that as women age, they use up those reserves they are born with. With each menstrual cycle, egg by egg, the stockpile wears down.

But is it true that women can’t produce any new oocytes in their adult life? Over the past decade, some scientists have begun to question the long-held assumption, publishing evidence that they can isolate egg-producing stem cells from adult human ovaries.

Last week, biologist Allan Spradling of the Howard Hughes Medical Institute and Carnegie Institution for Science, cast a shadow over those findings with a new analysis of the ovaries of adult female mice, which have similar reproductive systems to humans. By his measures of new egg formation, which he has previously studied and characterized during fetal development, there were no signs of activity in the adults.

“Personally, I think it’s quite clear,” says Spradling. “All the evidence has always said this. When oocyte development is going on, you see cysts everywhere. When you look at adults, you don’t see any.”

An oocyte, or egg cell, surrounded by some supporting cells.

The new paper does little to change the direction of those researchers already pursuing the stem cells, though. Jonathan Tilly of Massachusetts General Hospital was among the first to publish evidence that mice and human females have adult germ-line stem cells that can make new eggs.

“There’s so much evidence now from so many labs that have purified these cells and worked with these cells,” says Tilly. “What I don’t find of value is to say these cells don’t exist.”

For now, the two sides remain fractured — Spradling sees weaknesses in the way Tilly and others have isolated cells from the ovaries and suspects that the properties of the cells could change when they’re outside the body. And Tilly proposes that Spradling’s new data could be interpreted in a different way that in fact supports the presence of stem cells.

For women hoping for a scientific breakthrough to treat infertility — or even those simply curious about how their own body works — a consensus on the answer would be nice. But the continued probing on both sides may be just as much a boon to women’s health. After all, it’s questions like these that drive science forward.

In his new study, Spradling labeled a spattering of cells in the ovaries of female mice with fluorescent markers to make them visible and watched them as the mice aged. If any labeled cells were egg-producing stem cells, he says, they would spread the fluorescence as they made clusters of new eggs.

“But you never see clusters,” Spradling says. “Not once.”

In the process of this study, though, Spradling made new observations about how egg cells develop into their final form in female mice, published in a second paper this month. As the precursor cells to eggs mature, they lump together into cysts, a phenomenon also seen in the flies that Spradling has spent decades studying. In flies, one cyst eventually forms one egg. But in the mice, he discovered, those cysts break apart and form multiple eggs.

“This actually leads us to propose a new mechanism for what determines the number of oocytes,” says Spradling. And, of course, that means a better understanding of reproductive biology.

On the side of those who are confident about the existence of adult ovarian stem cells, the field of fertility medicine could be revolutionized if the cells that Tilly has isolated from ovaries can form healthy egg cells that can be fertilized in vitro. These stem cells could also be a tool to study more basic questions on oocyte development and formation or a screening platform for fertility drugs. Tilly is confident enough in the research that he has founded a company, OvaScience, to pursue the commercial and clinical potential of isolating the stem cells.

“The value for the lay public is that we have a new tool in our arsenal,” says Tilly.

Spradling doesn’t argue that continued research in this area isn’t a good thing. “Scientific knowledge doesn’t just come from the proposal of ideas, but also from their rigorous tests,” he says. “I think the most powerful tool we have in medical science is basic research,” he adds, referencing research using cell and animal studies. Investigations of the basics of how and when oocytes form, he says, are the best way forward toward developing ways to improve egg cell formation or development and could even lead to infertility treatments.

So if it finds support from further studies, Spradling’s new work — which states bluntly right in its title that “Female mice lack adult germ-line stem cells” — needn’t be seen as bad news for those dreaming of a breakthrough in understanding fertility. Instead, whether or not egg stem cells end up having clinical value, it’s a step forward in advancing understanding about women’s reproductive biology.

As Spradling puts it: “You have a much better chance of actually helping someone with infertility if you know what the real biology is. Right now, we’re a ways from really understanding the full biology, but we’re making progress.”

1 Direct quote from the third edition of “Human Physiology: An Integrated Approach”, one published by Pearson Education in 2004 and used in medical school classes. Continue reading →

Captivating and matriarchical: the meerkat.

Dominants, alphas, and queens: Happy Mother’s Day!

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Mothers who rule in the animal kingdom.

by Jacquelyn Gill

On the second Sunday in May in the United States, mothers reign supreme, receiving tributes of breakfast in bed, hand-made cards, flowers, and obligatory long-distance phone calls. Meanwhile, for the rest of the animal kingdom, it’s just another day: eat, hunt, mate, birth, nest, migrate, defend, and rest.

Some go it alone, but others—like spotted hyenas and bison—live in groups with complex social structures, and moms are at the top, year-round. In a matriarchy, females hold central roles of leadership and power. This might sound like a nice change of pace for some of us, but most anthropologists now agree that there have likely been no true matriarchal human societies (in spite of popular books like The Chalice and the Blade). Instead, matriarchies are more likely to be found in the rest of the animal kingdom, from meerkats to mammoths. Here are a few examples:

The Queen, surrounded by her supportive workers.

The Queen, surrounded by her supportive workers.

Honey bees: Bee colonies are giant matriarchal societies ruled by a single queen—quite literally the “queen mum.” Her offspring (as many as 25,000 at a time) make up the entire clan of female workers and male drones. The queen spends her life tended to by her worker daughters. These workers have underdeveloped reproductive systems, so the queen is the only female in the hive who gets to mate. The females do the work of the hive and tend to the queen while the male drones laze about until it’s time to mate with the queen. This setup might sound appealing at first, but it comes with a couple of important caveats. The Queen only mates once in her lifetime with a select handful of drones who were bred for that sole purpose (assuming they weren’t pushed out or killed by their worker sisters during tough times, when freeloading is less tolerated). During a series of nuptial flights, the queen gets all the sperm she’ll ever need for an entire lifetime—as many as five million individuals. She uses this sperm for to around 2500 eggs a day, which are tended to by her sterile daughters while she dines on royal jelly. The males get no reward for their service, but instead perish shortly after depositing their sperm, the unfortunate victims of an acute case of exploded abdomen.

Positives: Waited on hand-and-foot, low risk, low stress. Negatives: Once-in-a-lifetime mating, copious egg-laying.

Captivating and matriarchical: the meerkat.

Captivating and matriarchical: the meerkat.

Meerkats: Meerkat societies are highly structured, with a complex ranking system based on dominance. If you want to get ahead in the meerkat world, perfect the art of chin swiping and hip checking, practiced on those lower down the totem pole while someone more powerful than you is looking the other way. Being on top has its rewards; alpha female meerkats are the only ones who get to mate in meerkat town. A matriarch chooses her partner, who becomes the dominant (and only mating) male. Males initiate copulation by ritually grooming the female until she submits. If the matriarch tires of her partner, he’s quickly deposed by beta males who are more than eager to earn a chance at mating. Alpha females make all the decisions in the group: where to sleep, where to burrow, when to go outside, when to forage. Like bees, meerkat females are typically mother to all the pups in the group (females typically kill pups born of unsanctioned unions). In addition to being free to engage in mating, being a matriarchal meerkat comes with free baby-sitting and nursemaid service from the subordinate females (who also will lactate to feed her pups). The downside is that all the other females want your job; as they get older, the young females start hip-checking, stealing food, and even picking fights. Often, the alpha kicks young competitors out of the group before they get old enough to pose a threat.

Positives: Your clan, your rules; mate selection; ritual grooming; cooperative breeding. Negatives: High risk.

Cooperative and matriarchical.

Cooperative and matriarchical.

Killer whales (orcas): Killer whales have some of the most complex social structures known in nature and are found in large resident groups (mostly fish eaters), smaller transient groups (seal hunters), or offshore groups (of which relatively little is known). Killer whale societies are entirely structured around the maternal line, in a hierarchy of groups. The smallest of these is the matriline, which contains the oldest female and her direct descendents—as many as four generations in one (great grand-whale, grand-whales, mama whales, and baby whales). Several matrilines together make a pod, and groups of pods with the same dialect and shared maternal lineage form a clan. For killer whales in resident groups, the young live with their mothers for the their entire lives, while in the smaller, transient groups, females tend to depart once they become mothers of their own. Meanwhile, male killer whales are mama’s boys, maintaining a strong relationship with their mothers for life. Even siblings remain close after their mother dies. Unlike bees or meerkats, all females can mate as they wish, although almost always only with males from other pods. These close-knit groups are important for successful hunting, as well as for rearing young that require a lot of parental investment (like humans do!). A killer whale’s female relatives assist her during labor, and even help guide her 400 lb calf to the surface to take its first breath. This cooperative behavior is a key part of teaching calves important life skills like the complex group hunting strategies similar to those that wolf packs use.

Positives: Strong family structure, cooperative breeding, matrilineal. Negatives: The kids never leave home.

Don't let the tusks fool you: It's a she, and she's the boss.

Don’t let the tusks fool you: It’s a she, and she’s the boss.

Elephants: Female elephants live together in small family groups, typically consisting of a matriarch and her young or closest relatives. The oldest female elephant in each family group gets the job, and the position is passed down to her oldest daughter when she dies. Matriarchs have a lot of social power but are also the source of important lore in the herd, like where the water is, how to avoid predators, and even how to use various tools like makeshift fly-swatters. Meanwhile, males live bachelor lifestyles, fending for themselves alone or in small groups after getting kicked out at puberty. Male and female elephants occasionally come together to socialize or mate, but otherwise live separately. Unlike bees, meerkats, and killer whales, female elephants have a lot less control in the mating process. Fertile females are followed around by aggressive bulls who rumble, produce a musky scent that they disperse by flapping their ears, and fight off other interested parties. For young female elephants, this mating behavior can be a bit intimidating, and so her female relatives will often stay by her side to provide moral support. After a two-year pregnancy, a female will give birth to a calf, which quickly becomes the center of herd life, as female relatives caress and welcome the newborn. The perks of elephant motherhood include free babysitting and protection from predators; females will circle the young when they sense danger. In some Asian elephant populations, multiple families have even been observed coming together to form specialized groups for nursing or juvenile care, like a cooperative preschool.

Positives: Strong family ties, cooperative parenting. Negatives: Lack of mate control, two-year pregnancy (!).

Many different kinds of matriarchy exist in the animal kingdom, as do many kinds of moms. Whether you’re a queen or a worker, an alpha or a beta, a subdominant or a matriarch, Happy Mother’s Day to moms everywhere.

References

The Living Elephants: Evolutionary Ecology, Behavior, and Conservation, Raman Sukumar. Oxford University Press, Oxford, UK. Kalahari Meerkat Project, Cambridge University

Killer Whales: The Natural History and Genealogy of Orcinus Orca in British Columbia and Washington, Kenneth C. Ford, Graeme M. Ellis, & Kenneth C. Balcomb. University of British Comumbia Press, Vancouver.

WebBeePop, Carl Hayden Bee Research Center, USDA Agricultural Research Service

[Photo credits: all photos are from Wikipedia with Creative Commons with Attribution liceneses except for #3, which is Public Domain: (1) A queen bee surrounded by her worker daughters. Photo by Waugsberg. (2) A meerkat in the Kalahari. Photo by Muriel Gottrop. (3) A mother-calf killer whale pair. Photo by Robert Pitman. (4) A matriarchal elephant and her family. Photo by Amoghavarsha.] Continue reading →

Robotic hysterectomy more expensive: but better?

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In a word, no (unless you have cancer).

by Jennifer Gunter, MD, FRCS(C), FACOG, DABPM

So, let’s take cancer out of the picture and discuss hysterectomy for non-cancerous (benign) reasons.

First of all. A hysterectomy (removing the uterus) can be done via one of these four methods:

  1. Vaginal, a small incision at the top of the vagina and the uterus is removed entirely through the vagina without any incision on the abdomen.
  2. Laparoscopic surgery, where incisions are made in the belly and an operating telescope is inserted. The uterus is then removed either through a small incision in the belly wall or through the vagina.
  3. A robotic surgery, which is laparoscopic surgery (see #2) performed with specialized equipment. The surgeon actually sits at a consult and operates the equipment remotely. An assistant is scrubbed in during the case to help with the equipment.
  4. An abdominal hysterectomy. This requires an incision in the belly and has much longer recovery times than the other 3 options. This is what most people visualize when they think of surgery.

The American Congress of OB/GYN (ACOG) recommends vaginal hysterectomy as the least invasive method (least invasive is almost always the best option) with the best outcomes. Sometimes a vaginal hysterectomy isn’t feasible for technical reasons and then a laparoscopic approach is favored. There is no study that suggests a robotic hysterectomy offers any medical advantage over a vaginal or a laparoscopic hysterectomy when cancer isn’t the reason for the surgery.

So if there is no advantage to robotic hysterectomies, why are gynecologists pushing them? And make no mistake, they are pushing them as 3 years ago 0.5% of hysterectomies were robotic and now that number has soared exponentially to 10% (JAMA, 2013)

Why this exponential increase? I can think of four reasons:

  1. They need the practice. The gynecologists want to learn the new technique (see the marketing angle below), but it takes quite a few cases to get good.
  2. A marketing tool. Hey, robots are cool, they’re new, they must be better! People will want robots.
  3. Hospitals are pushing GYNs to use the surgical robot, the robot that cost about $1.7 million to buy in addition to $125,000 in annual maintenance. Hospitals need to keep the robot in use to cover these expenses. That money can only come from your insurance company, your tax dollars (Medicaid and Medicare), or directly from you.
  4. They don’t know the literature and believe the hype from the reps who sell the robots.

According to ACOG:

Robotic surgery is not the only or the best minimally invasive approach for hysterectomy. Nor is it the most cost-efficient. It is important to separate the marketing hype from the reality when considering the best surgical approach for hysterectomies

And

…there is no good data proving that robotic hysterectomy is even as good as—let alone better—than existing, and far less costly, minimally invasive alternatives.

A robot adds $2000 to a hysterectomy. If every non-cancer (benign) hysterectomy in the United States were performed with a robot, ACOG estimates that $960 million to $1.9 billion will be added to the health care system each year.

If your GYN is recommending robotic surgery over a vaginal or a traditional laparoscopic hysterectomy and you don’t have cancer, you need to ask, “Why?” (and take a look to see if robotic surgery is featured prominently on the web page and the practice’s marketing).

New technology isn’t always better. While a robot can lead to improved outcomes for complex cancer cases (they allow the surgeon to do the case with a laparoscopically rather than with a big incision), using a robot for a benign hysterectomy is like driving a Ferrari with the speedometer set so the car can’t exceed 15 miles an hour. It might look cooler, but it’s going to cost you a lot more up front and in maintenance and it’s not going to get you around the city any faster or safer than a Honda.

We are all stewards of the health care system. Wasting $2000 per patient on the costs to run a robot for a benign hysterectomy is simply funding the salaries of the people who sell surgical robots and increasing the cost of health care for everyone else, because we all pay when care becomes more expensive with higher premiums and co-payments.

Dr. Jennifer Gunter is an OB/GYN and a pain medicine physician who has authored the book, The Preemie Primer, a guide for parents of premature babies. In addition to her academic publications, her writing has appeared inUSA Today, the A Cup of Comfort series, KevinMD.com, EmpowHer.com, Exceptional Parent, Parents Press, Sacramento Parent, and the Marin Independent Journal.

Image source: Wikimedia Commons and Wikimedia Commons

From the editors: What does it look like when a robot does a hysterectomy? This (yes, apparently promotional) video, produced by a hospital in California, gives us a look: