Friday, November 8, 2013

Rules to Require Equal Coverage for Mental Ills -

The Obama administration on Friday will complete a generation-long effort to require insurers to cover care for mental health and addiction just like physical illnesses when it issues long-awaited regulations defining parity in benefits and treatment.

The rules, which will apply to almost all forms of insurance, will have far-reaching consequences for many Americans. In the White House, the regulations are also seen as critical to President Obama's program for curbing gun violence by addressing an issue on which there is bipartisan agreement: Making treatment more available to those with mental illness could reduce killings, including mass murders.

In issuing the regulations, senior officials said, the administration will have acted on all 23 executive actions that the president and Vice President Joseph R. Biden Jr. announced early this year to reduce gun crimes after the Newtown, Conn., school massacre. In planning those actions, the administration anticipated that gun control legislation would fail in Congress as pressure from the gun lobby proved longer-lasting than the national trauma over the killings of first graders and their caretakers last Dec. 14.

"We feel actually like we've made a lot of progress on mental health as a result in this year, and this is kind of the big one," said a senior administration official, one of several who described the outlines of the regulations that Kathleen Sebelius, the secretary of health and human services, will announce at a mental health conference on Friday in Atlanta with the former first lady Rosalynn Carter.

While laws and regulations dating to 1996 took initial steps in requiring insurance parity for medical and mental health, "here we're doing full parity, and we've also taken steps to extend it to the people covered in the Affordable Care Act," the senior official said. "This is kind of the final word on parity."

With the announcement, the administration will make some news that is certain to be popular with many Americans at a time when Mr. Obama and Ms. Sebelius have been on the defensive for the bungled introduction of the insurance marketplaces created under the Affordable Care Act.

According to administration officials, the rule would ensure that health plans' co-payments, deductibles and limits on visits to health care providers are not more restrictive or less generous for mental health benefits than for medical and surgical benefits. Significantly, the regulations would clarify how parity applies to residential treatments and outpatient services, where much of the care for people with addictions or mental illnesses occurs.

Any geographic or facility-type limitations would have to be comparable for medical and mental health benefits. For example, an administration official said, an insurer "can't say you can only get substance-abuse treatment in state but you can go anywhere for medical/surgical."

The regulations, which specifically put into effect the 2008 Mental Health Parity and Addiction Equity Act, would affect most Americans with insurance — roughly 85 percent of the population — whether their policies are from employer plans, other group plans, or coverage purchased in the market for individual plans.

The final parity rules do not apply to health plans that manage care for millions of low-income people on Medicaid. However, the administration has previously issued guidance to state health officials saying that such plans should meet the parity requirements of the 2008 law.

The parity law does not apply to Medicare, according to Irvin L. Muszynski, a lawyer at the American Psychiatric Association.

The rules have been awaited since the 2008 law by patient advocate groups. As it happened, the groups' complaints about regulatory delays were the subject of a Senate hearing on Thursday. Interest picked up further last month as individuals could begin enrolling in the new insurance marketplaces, or exchanges, provided under Mr. Obama's health care law.

Under that law,treatment for mental health and substance abuse is among 10 categories of benefits considered essential and thus mandatory in plans marketed in the new exchanges to individuals and small groups. Although many insurers already provide extensive mental health coverage, some have found ways to get around existing rules and to deny payment for treatment, or to otherwise limit the benefits.

Senator Richard Blumenthal, Democrat of Connecticut, said the five-year delay in issuing a final rule had real-world consequences. "In mental health, uncertainty kills," he said. "If an individual poses a threat to himself or others, he cannot be told he will get the care he needs as soon as his insurance company decides what 'parity' means."

Insurance companies have raised concerns about the expense involved in paying for the lengthy and intensive courses of treatment that the final regulations address. But experts have said the rules are not expected to significantly add to the cost of coverage because so few patients require these levels of care.

Mental health services are scarce in many parts of the country, particularly for children, so experts have questioned whether changes in the law will have much impact in practice.

Former Representative Patrick J. Kennedy of Rhode Island, a co-sponsor of the 2008 law, said the rules could particularly help veterans. "No one stands to gain more from true parity than the men and women who have served our country and now need treatment for the invisible wounds they have brought home from Iraq and Afghanistan," he said.

Administration officials consulted closely with mental health groups. "What we are hearing is very positive," said Andrew Sperling, a lobbyist at the National Alliance on Mental Illness, based on what he had been told of the final language.

Under the 2008 law, treatment limits — like restrictions on the number of doctor visits or days in a hospital — cannot be more restrictive for mental health benefits than for medical and surgical benefits. But interpretation of the law left much in question.

For example, Mr. Sperling said, policyholders can easily determine whether numerical limits on doctor visits are comparable in their plans for mental and medical health care. But, he said, it is more difficult to challenge "nonquantitative limits" — like some insurers' requirements that people get their authorization before seeing a psychotherapist.

The provision of the rule that will seek to clarify the amount of transparency required of health plans "is important," Mr. Sperling said. Patients advocates say they need to be able to see the criteria by which insurers find a particular service to be medically necessary, so policyholders can judge whether standards for mental health treatments are more restrictive.

Carol A. McDaid, the leader of a coalition of patients and providers of mental health and addiction services, said: "This is the beginning, not the end, of our work to make the vision of the law a reality. We have to make sure that the law and the rules are fully enforced."

Insurers and business trade groups said they did not know enough about the rules to comment.

Dr. Paul Summergrad of Tufts University, president-elect of the American Psychiatric Association, said he hoped the final rules would end "the uniquely discriminatory form of prior authorization and utilization review" applied to emergency care for patients with mental illness.

A person who has a heart attack or pneumonia and goes to a hospital will routinely be admitted, with electronic notice sent to the insurer on the next business day, Dr. Summergrad said. By contrast, he said, if a person who is profoundly depressed and tried to commit suicide goes to a hospital, an emergency room doctor must call a toll-free telephone number, "present the case in voluminous detail and get prior authorization."

State insurance commissioners will apparently have the primary responsibility for seeing that commercial insurers comply with the parity standards. They already have their hands full, however, enforcing new insurance market rules, and in some states insurance regulators are considered close to the industry.

"We need enforcement," Mr. Kennedy said in an interview. "The notion of delegating this to the states, which are looking to the federal government for direction, is problematic."

Wednesday, November 6, 2013

Personalized Medicine: The Future is Now | FDA Voice

The difference between science and science fiction is a line that seems ever harder to distinguish, thanks in part to a host of astonishing advances in medical science that are helping to create a new age of promise and possibility for patients.

Today cancer drugs are increasingly twinned with a diagnostic device that can determine whether a patient will respond to the drug based on their tumor's genetic characteristics; medical imaging can be used to identify the best implantable device to treat a specific patient with clogged coronary arteries; and progress in regenerative medicine and stem cell therapy using a patient's own cells could lead to the replacement or regeneration of their missing or damaged tissues. Given these trends, the future of medicine is rapidly approaching the promising level of care and cure once imagined by Hollywood in futuristic dramas like Star Trek.

But these examples are not science fiction. They are very real achievements that demonstrate the era of "personalized medicine" where advances in the science of drug development, the study of genes and their functions, the availability of increasingly powerful computers and other technologies, combined with our greater understanding of the complexity of disease, makes it possible to tailor treatments to the needs of an individual patient. We now know that patients with similar symptoms may have different diseases with different causes. Individual patients who may appear to have the same disease may respond differently (or not at all) to treatments of that disease.

FDA has been playing a critical role in the growth of this new era for a number of years. Even before I became FDA Commissioner the agency was creating the organizational infrastructure and putting in place the regulatory processes and policies needed to meet the challenges of regulating these complex products and coordinating their review and oversight. It has been my pleasure to serve at FDA during this next exciting period and to help ensure that the agency continues to prioritize this evolution by anticipating, responding to, and encouraging scientific advancements.

I am very pleased to be able to present a new report by FDA as part of our ongoing efforts in this field. Paving the Way for Personalized Medicine: FDA's Role in a New Era of Medical Product Development describes many of the exciting developments and looming advances in personalized medicine, lays out the historical progress in this field, and examines FDA's regulatory role: from ensuring the availability of safe and effective diagnostic devices, to addressing the challenges of aligning a drug with a diagnostic device, to post-market surveillance.

Outside collaboration and information sharing is essential for this field to flourish. On Tuesday, the American Association for Cancer Research and AdvaMedDX held a fruitful daylong conversation on personalized medicine to treat cancer. I was one of the speakers, participating in a conversation with Dr. Francis Collins, the head of the National Institutes of Health. Our discussion focused in part on current status of drug and diagnostic co-development and the challenges and potential of whole genome sequencing, where data can be collected on a patient's entire genetic makeup at a reasonable cost in a reasonable amount of time.

FDA is committed to fostering these cooperative efforts, as it will require the full force of government, private industry, academia and other concerned stakeholders to maximize our efforts and fully realize the promise of personalized medicine. Our new report outlines that commitment, and helps chart the way forward so that more people can live long and prosper.

Margaret A. Hamburg is the Commissioner of the Food and Drug Administration

Tuesday, November 5, 2013

Hopeful Glimmers in Long War on Cancer -

This week's Retro Report video examines the "war on cancer" — a federal research initiative authorized by President Richard M. Nixon in 1971. Many anticipated quick results, in part because of the public relations campaign, complete with ads suggesting we could cure cancer by the bicentennial, that successfully pushed Mr. Nixon into making the commitment.

Since then, the United States government has spent over $100 billion on research. For a look at the course of the war on cancer, watch the video above. And here, a veteran medical reporter who wrote a 2009 series about cancer, Forty Years' War, reflects on the progress of recent years.

It was 2008 and a woman my editor and I knew had just died of cancer. One of the last things she said to my editor was a bitter lament: "What ever happened to the" [expletive] "war on cancer?"

Well, I told my editor, it was clear we hadn't won that war. But the question was why. Why was progress so slow? Was it that cancer is a difficult disease or was it that other impediments got in the way? I thought it was probably that cancer was hard to fight. But it turned out that was only part of the problem.

Much money was being spent, but not always wisely, medical experts said.

There were federal grants ostensibly about cancer that were only tangentially related. It reminded me of my days as a molecular biology graduate student. A friend was studying the expression of genes in bacteria that were involved in lactose metabolism. He got a grant from the arthritis institute of the National Institutes of Health. I asked him how he ever accomplished that and he explained that if you write your proposal correctly you can make bacteria gene expression sound relevant to almost anything.

There also was money squandered on clinical trials that were so unimaginative and so uninteresting that they dwindled away, unable to recruit enough patients to come to any conclusions.

There were national campaigns to get people screened for cancers, even though many types of cancer screening have not been found to reduce death rates. Screening also leads doctors to find and aggressively treat cancers that would never have grown or spread or caused a problem if they had never been found and had been left alone. The only screening tests that do reduce death rates, studies have found, are Pap tests for cervical cancer, any of the three screening tests for colon cancer — colonoscopy, fecal occult blood tests or sigmoidoscopy — and a lung cancer screening test for smokers.

The much touted recent drops in some cancer rates were mostly attributable not to cancer breakthroughs but to a decline in smoking that began decades ago — propelled, in part, by federal antismoking campaigns that began in the 1960s.

Another drop in cancer rates was a consequence of something totally unrelated to the war on cancer. In 2002, a large federal study, the Women's Health Initiative, stopped early because it was finding that the treatment being tested, hormone therapy for menopausal women, had harms outweighing any benefit. Women immediately stopped taking the drugs. It turned out that one of the harmful effects was a slightly increased risk of breast cancer. When women stopped taking the hormones, an estrogen and a progestin, the breast cancer rate finally fell — the first time that had happened — by almost the exact amount predicted if women stopped taking the pills.

So it looked like progress against cancer had not come from the "war" so much as from other events. And it looked like cancer was just about as formidable as ever.

But that was in 2008. Now scientists seem to be entering a new era of optimism.

It began with insights from the much ballyhooed and then much maligned Human Genome Project. The project, to determine the sequence of human DNA, at first used expensive and laborious methods but as it went on, scientists developed much cheaper and faster ways of sequencing. With fast sequencing, the cancer institute sponsored large studies of cancer genomes, looking for mutations that seem to drive tumor growth. And drug companies looked on their own for critical cancer mutations that might make good targets for drugs.

The results are dozens of drugs that attack various mutated genes in cancer cells. The drugs are just now starting to enter the market. A few of the older ones, like Herceptin and Gleevec, developed before the new sequencing methods evolved, have made previously untreatable cancers treatable. Gleevec has turned certain blood cancers from a lethal cancer into a manageable chronic disease. Herceptin has made a form of breast cancer with the worst prognosis into one that now has the best prognosis.

But the problem with the new targeted drugs is that just as bacteria grow resistant to antibiotics, so cancers almost inevitably grow resistant to a drug that attacks a crucial mutation. The new targeted drugs can buy patients with metastatic cancer time, and, eventually, by combining drugs, scientists might be able to bar all cancers' escape routes. But for now, the new drugs rarely are cures, and they also are incredibly expensive, usually costing well over $100,000.

On the horizon is yet another sort of treatment. It unleashes the immune system, allowing it to kill cancer cells. These drugs are only starting to be developed, but some patients have had astonishing responses. Companies and researchers are buoyant, though they are also mindful of previous failed drugs and are wary of overpromising.

One way to look at the era researchers say they are entering is to say that the war on cancer was the impetus. It spurred interest in the disease and as a result money flowed to basic research. Another way to look at it is to say basic research was the key and the war on cancer was incidental.

But whether the war on cancer was more slogan or solution, most researchers believe cancer treatment, at least, is starting to change. After decades of little progress, they now are starting to go beyond the old mainstays (chemotherapy, surgery and radiation) that have never been enough against this disease.

The biggest challenge, prevention, remains. And other than stopping smoking, nothing yet has been terribly promising.

Monday, November 4, 2013

Be a Prepared Patient: Resources help you find good health care and make the most of it | Center for Advancing Health

Since it was founded in 1992, the Center for Advancing Health has aimed to increase people's engagement in their health and health care. While advances in medical knowledge have been responsible for steady increases in the length and quality of life of Americans, the potential of health care to improve individual and population health in the future rests increasingly in the hands of individuals. Whether we are sick or well, we will not benefit from the expertise of health professionals and the technologies they deploy unless we participate actively and knowledgably in our own care.

The stakes for each of us — and the nation — are high: There is evidence that the more engaged we are in our care, the better we do. And conversely, our lack of participation contributes to preventable illness, complications and death, wastes precious health care resources, and disproportionately erodes the health of those of us who are unable to participate effectively in our care. What can be done to ensure that all Americans are able to act effectively to find and benefit from their health care? And how will we ensure that those who lack the skills or resources or who are already ill do not suffer because of their inability to participate in their care? Our current activities are directed toward addressing these questions.

The CFAH Engagement Behavior Framework serves as the basis for all our work. It is a comprehensive list of the actions each person must take to benefit from their care. No one has to do all these things now. But each of us — or our loved ones — must do all of them at some point in order to fully benefit from the health care available to us. The Framework serves as a specific and demanding roadmap for our activities. Our aim is to ensure that every adult in the U.S. has the knowledge, skills and opportunity to perform each of these behaviors.

Take a look at the CFAH Snapshot report which estimates the extent to which people currently perform these actions. This rough epidemiology of engagement in health care is based on surveys sponsored by the federal government and foundations and provides a rough estimate of the size and scope of the challenge.

Browse through the Prepared Patient Blog posts. Each post addresses some aspect of what it takes to find good care and make the most of it: In other words, what challenges and opportunities people face in benefiting from their care.

While you are in the Be a Prepared Patient section of this site, take a look at the resources behind each of the categories of actions in the Engagement Behavior Framework. You will find all of the CFAH original health news stories and features and other patient resources to help people take effective steps.

As we continue to expand the reach of our work, we will continue to advocate for public and private policies that support the active, effective participation by individuals in their care and to produce and disseminate to the news media new stories on the latest research relevant to individuals' engagement in their care.

We welcome your interest in our work and hope we can persuade you to join us in our efforts to ensure that all Americans have the opportunity to act in ways that help them live for as well and as long as they can.


Jessie C. Gruman, Ph.D.
Center for Advancing Health

Peter Ubel - Critical Decisions How You and Your Doctor Can Make the Right Medical Choices Together

The diagnosis is prostate cancer. The patient, overwhelmed by the bad news, has to figure out the relative pros and cons of surgery, radiation and 'watchful waiting'.

The young woman is in a persistent vegetative state. Her parents decide that it is time to take her off the ventilator that is keeping her alive. But her doctor refuses.

The operation will slow the patient's death, not cure her. Partway through the procedure, her surgeon realizes that removing her throat tumor will leave her without speech but that halting the surgery will expose her to infection. Should he continue to operate?

What are the best medical choices for these people?

For us?

Who should be making these critical decisions?

Health care has come a long way since the days when doctors withheld bad news and made every decision in patient treatment. In today's world of "patient empowerment," patients have been told they hold all the cards. But even if that were true (and it's not!), most wouldn't know how to play them anyway.

In this book I show how hidden dynamics in the doctor/patient relationship keep us, and our loved ones, from making the best medical choices. From doctors who struggle to explain, to patients who fail to properly listen, countless factors alter the course of our care, causing things to go seriously awry.

I discuss how patients and doctors can learn to become partners, and work together to make the right choices. From whether to get surgery to deciding whether the side effects of a blood pressure medication are worth the trouble, we can discover the tools to improve communication, understand the issues, and make confident decisions for our future health and happiness.

Mayo Clinic Transform 2013 Symposium, "INSIGHTS" with MK Czerwiec and Michael Green, M.D - YouTube

MK Czerwiec, and Michael Green, M.D., present comics as a way of transforming healthcare the role of graphic medicine. 

At the heart of the use of graphics is an attempt to find a better way to tell patient stories. Many medical issues are difficult to communicate; comics demonstrate complex emotion. A rare combination of complexity and simplicity they help us to generalization and provide more ability for many to relate, not just an individual.

Graphic Medicine | Exploring the interaction between the medium of comics and the discourse of healthcare.

Graphic Medicine is a site that explores the interaction between the medium of comics and the discourse of healthcare. You'll find a growing collection of comic reviews, articles, podcasts, links, and coverage of our international Comics and Medicine Conferences. We encourage participation by academics, health carers, authors, artists, fans, and anyone involved with comics and medicine.

I have coined the title "graphic medicine" for this site as a handy term to denote the role that comics can play in the study and delivery of healthcare. Michael Green and Kimberley Myers acknowledged my origination of the term in their paper

Graphic medicine: use of comics in medical education and patient care
BMJ 2010;340:c863

I wrote my MA dissertation on comics as a resource for healthcare professionals (ahem, I got a distinction)

It has long been known that comics are "not just for kids". Over the past decade this underrated medium has begun to receive recognition and acclaim from literary critics, academics, and broadsheet reviewers. This renaissance is partly due to the rise in popularity of the graphic novel. In contrast to production line, genre based, mainstream comics, graphic novels are full length, square bound "serious" comic books, aimed at adults, usually written and illustrated by one person, thus encapsulating the style, narrative and subjective worldview of an individual. Often drawing on direct experience, the author builds a world into which the reader is drawn. Amongst the growing number of autobiographical works, titles dealing directly with the patient experience of illness or caring for others with an illness are to be found.

Thanks in part to the medical humanities movement many medical schools will now have tutors suggesting students read classic literature or modern novels to gain insight into the human condition. I think is high time that graphic fiction was taken as seriously: comics and graphic novels could be used as a resource for health professionals, playing a valuable role in:

Reflecting or changing cultural perceptions of medicine
Relating the subjective patient/carer/provider experience
Enabling discussion of difficult subjects
Helping other sufferers or carers

Of course stories, whether written or drawn are not real life; even autobiographies are carefully constructed representations. Written stories tend to have a structure, with some sort of ultimate resolution (as well as a beginning and middle). Stories of illness that are written down or drawn by skilled, articulate authors, published by a commercial company and bought by enough people to warrant reprinting, are a highly selected marginal subgroup of the total that are "out there", passed on by word of mouth, unwritten. Many of these "other" stories will be incoherent, too painful to relate, too distressing to hear, and so utterly bleak, miserable or banal that no commercial press is ever likely to publish them. There are other arguments against taking literature or comics as representative of real experience.

Dr Ian Williams
General Practitioner and Trainer, North Wales

Making Hospital Prices Matter - Peter Ubel- Forbes

I recently learned about a company called OpsCost, which has a very user-friendly website designed to help people figure out how much different hospitals charge for a wide range of treatments and procedures. The company makes use of the data that the Medicare program has recently made available to the general public, and then presents those data more elegantly than many other sites I have seen. You can go here to look at the company website, and you will quickly find yourself looking up prices for hospitals in your region.  (Disclosure: I have not received any money from any price transparency companies, nor entered into any business relationships.)

For example, I told the website that I wanted to look at hospital prices near Durham, North Carolina, for "Hip & Femur Procedures Except Major Joint Without Complications And Comorbities/Major Complications And Comorbities," and the program showed me a list of hospitals and prices, with a Google map on the right-hand side showing where each hospital was located. Pretty nifty. But is it useful?
Consider the information it provided me about the three hospitals closest to Durham North Carolina:





1Duke University Hospital
2301 Erwin Rd
Durham, NC 27710
$40,294$14,0372.48 mi
2University Of North Carolina Hospital
101 Manning Dr
Chapel Hill, NC 27514
$25,457$14,86010.80 mi
3Rex Hospital
4420 Lake Boone Trl
Raleigh, NC 27607
$33,850$8,42616.44 mi

If I was a Medicare enrollee, something that won't be true for another 14 years, I would know how much the federal government would have to pay if I needed a treatment like this. But I wouldn't know how much Peter Ubelwould have to pay. The amount I would have to pay would depend upon what kind of Medicare supplemental insurance I had purchased. For example, if I were required to cover a standard hospital co-pay, for instance, then these three hospitals would cost me the same amount, and therefore Medicare reimbursement – what the government pays to these hospitals – would be irrelevant to me. If anything, this information might make me more interested in going to Duke University Hospital, because I could see that they normally charge a lot more for this procedure, and might therefore conclude that I am getting a real bargain by going there. People, as I have written in anearlier post, might take the billing price as a signal of hospital quality.

If I had private insurance, then these prices would again be irrelevant to me, because there would not necessarily be any tight connection between what a hospital bills Medicare for, and what they bill specific insurance companies for.

On the other hand, if I was uninsured, I could see this kind of information making me very wary of both Duke University Hospital and Rex Hospital. But should I be wary? Remember, what I would really want to know here is not the amount these hospitals each bill to Medicare, but the amount they bill to uninsured patients and, much more importantly, the amount they typically settle for when receiving payment from people who lack health insurance.

So what is the point of a system like the one developed by OpsCost? I think this type of system will become very useful, to a very large number of people, once a wider range of price data become available. In North Carolina, for example, the state legislature recently passed a law requiring hospitals to make several kinds of price information available, including the average amount they settle for when billing uninsured patients, and the average amount they charge to the largest insurers in the state. Massachusetts and New Hampshire have passed price transparency legislation of their own, legislation that was given a grade of A by The Healthcare Incentives Improvement Institute. I expect more states to pass similar legislation, meaning companies like OpsCost will soon have a larger number of numbers to plug into their user-friendly websites.

Will this improve consumer decision-making? That remains to be seen. With an increasing number of consumers signing up for high deductible health insurance plans, it's easy to imagine a large number of people going to websites like this before deciding where to receive their care. And it may not take much of a shift in consumer behavior to force high cost hospitals to lower their prices, or to make sure to explain to consumers why their higher prices are justified.

For better or worse, mainly for better in my opinion, we are entering into a new world, where American hospitals can no longer expect to hide their prices behind a veil of secrecy.

Doctor, First Tell Me What It Costs -

If an antibiotic would cure your infection, your doctor would probably still warn you about the chance of sun sensitivity before prescribing the pill.

But even when the costs of a medical intervention might force patients to choose between paying the bill or keeping up with their mortgages, American physicians rarely discuss that serious side effect with them. One physician recently explained to me that he felt money talk would "violate the doctor-patient relationship."

Given how much attention we have been focusing on health care costs and the Affordable Care Act, now is the time to change such thinking.

In The New England Journal of Medicine last month, two colleagues and I wrote an essay intended for physicians; we argued that they should discuss out-of-pocket costs with patients just as they discuss any side effects. After all, the financial burden of paying for medical care can cause more distress in patients' lives than many medical side effects, and patients can decide whether any of the downsides of treatment are justified by the benefits.

Take, for example, a patient with colon cancer whose oncologist is considering prescribing Avastin. Most physicians would go out of their way to warn that this drug could harm a patient's heart; the data show that it carries a 2 percent risk of cardiovascular toxicity. But few physicians would discuss the price, even though Avastin can cost more than $50,000 per patient, and a Medicare patient without supplemental insurance could be responsible for nearly $9,000 of that.

The Affordable Care Act will have only a modest impact on patient exposure to health care costs because the limits it sets on out-of-pocket costs are still high compared with most people's resources. And in the last six years, according to the Kaiser Family Foundation, we've seen a threefold increase in the number of people choosing high-deductible plans.

The Center for American Progress estimates that a breast-cancer patient in Massachusetts with a high-deductible plan could face more than $50,000 in medical expenses. That's more than the average lifetime savings of the majority of American families.

In our New England Journal article, we tried to convince physicians that they needed to start incorporating the cost of care into their clinical conversations. But patients should not be afraid to take the lead and ask how much a pill or procedure will cost. Far too often, patients bring up such questions only after they have already experienced treatment-related financial distress. My colleagues and I confirmed that during interviews with breast cancer survivors; in a number of cases, the physician had told the patient that if she had only mentioned a concern about the cost earlier, the doctor could have suggested less expensive alternatives.

That kind of lapse should never happen. No one should have to suffer unnecessarily from the cost of medical care. Simply put, discussing costs in the doctor's office is good medicine.

Peter A. Ubel, a professor of medicine at Duke University, is the author of "Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together."

Sunday, November 3, 2013

A Boy's Life With Cerebral Palsy, Revealed in Tumblr 'Aaronverse' -

Hidden in Tumblr's bottomless trove of illustrated quotations, posts debunking falsely attributed illustrated quotations, pornography and obsessively composed photos of huckleberry muffins, is a blog written by a twelve-year-old from the Bronx named Aaron Philip.

The earnest voice of his Tumblr blog, Aaronverse, caught the attention of Tumblr's 27-year-old chief executive, David Karp. In June, Mr. Karp met with the young blogger at the company's office in the Flatiron district for an hour and a half, to talk about his blog and his life with cerebral palsy.

As the meeting drew to a close, Mr. Karp clicked through Aaron's Tumblr site and asked, "Do you like public speaking?"

Aaron answered, "No, not really." At school, being on stage had been humiliating for him. "One time, during a class dance performance at school, we went over, 'Make sure, at the end of the dance, Aaron gets wheeled with you guys offstage.' The teacher went over that again and again. But the dance performance ended. No one wheeled me off. I got left on stage," he said.

Mr. Karp said he was very sorry to hear that. He then invited the boy to address his entire staff, on Tuesday. Despite his past embarrassment, Aaron thanked him and said yes. Mr. Karp did not respond to a request for an interview and a spokeswoman did not provide any information regarding how and why he had been drawn to Aaron's blog.

Aaron's family lives in subsidized housing in the Bronx, but their relative poverty is a recent development. "I was born 12 years ago, a premature 7-month baby on the beautiful island of Antigua. I was so tiny, that my parents had to cut newborn pampers in half just to fit me," he wrote in an email. "Wow, I was an ant."

In Antigua, his father was a customs officer and his mother worked for a utility company. When Aaron was a toddler, his cerebral palsy emerged. "His left side was already folded in. His neck was down to his left shoulder and his leg was pulled in," said Lydia Philip, his mother.

Antigua provided only limited care for children with cerebral palsy. When Aaron was 3, the family decided to seek more extensive medical care for him and so split up, with he and his mother emigrating to New York and leaving behind his father and healthy little brother, Aren. But after Aaron's mother used up her six-month leave of absence from work, she returned to Antigua, switching places with Aaron's father, Petrone Philip.

Aaron and his father moved into a homeless shelter in Manhattan in 2010, where they lived until they were able to move to their Bronx home last year. Aren then joined his father and brother in the new apartment. His father works in a school cafeteria and recently earned his American citizenship.

"My family are like a group of candles lighting a room. There are only three candles in the room, which light up the room partially," Aaron said. "In order to fully illuminate the room, we need a fourth candle. That fourth candle is my mother."

Despite his father's diminished income, Aaron has been able to get the treatment he needs: A double-hip surgery was paid for by state-subsidized insurance, and at his school, Public School 333, he is assisted by a paraprofessional and an occupational therapist, Debra Fisher, who has been working with him for the last seven years.

Ms. Fisher first met the boy as a kindergartner. On their first excursion out of the school, she escorted him as he rode in his electric wheelchair along a sidewalk on the Upper West Side. He blurted out, "Refinance. Bikini Bootcamp." She feared that in addition to his physical disability, he might be mentally disabled. "Easy money, easy money," his deadpanned, looking straight ahead. It took her a minute to understand: he was reading the surrounding shop signs aloud. Though just starting kindergarten, he had already taught himself to read on his Leapster, an educational tablet.

I first met Aaron earlier this year, on his final day of sixth grade. It was a clear June day. We were in the Blue Sky Room, a therapy space in his school where he develops his motor skills three times a week. It resembles a compact gymnasium crowded with thick mats, pull up rings, and big inflatable balls. Ms. Fisher works with him on grasping, raking, and releasing small objects, training his muscles to function so that he can hold a pencil to write and draw like other students.

He types with just one finger, swooshing it from key to key to compose Aaronverse, which mixes childish enthusiasm with candor and the metaphors he is constantly inventing. "When I read, the biggest moment pops up like a hologram in the sky, and I have a locker in my head, and I lock that image up," he said. As he spoke, his small elbow got trapped in the space between his lap desk and his wheelchair; Ms. Fisher removed it. "When I'm done, I just want to lie there for days to recover. I'm exhausted. And then my brain has to return to my body," he said.

In the living room of Aaron's home, Skype, the Internet videoconferencing service, is perpetually on, revealing the family's home in Antigua with the ramps and widened doors that were built to accommodate Aaron's wheelchair. "On the western side of our house there is a beautiful view of the Caribbean Sea," Aaron's father said, of the house he hasn't entered in seven years. "It's a small inlet with a mangrove swamp. The most beautiful."

His mother walks through the home, on-screen and off. She steps out of view to prepare a meal and do the laundry. She comes back into the picture to help her two sons with their homework. For Aaron, the Skype connection is not enough. "I wish that I was sleeping peacefully,'' he wrote in an email. "I hear my bedroom window collapse into crystals. I look around abruptly, until I see feathers on the ground. Then, I look up. It's a lady with wings. It's not just a lady. It's my mother. She flew from Antigua. She shows me her visa. I automatically know that the pain and suffering is gone."

On Monday, Aaron, now a seventh grader at Public School 333, was back in school, preparing his remarks on life with cerebral palsy and creating art about disability, despite his disability, for the coders and designers of the website he shares his stories on.


Hi there! I'm Aaron, and I have a disability called cerebral palsy. In this blog, I'm writing about my life due to my disability, and how it makes things different for me. I also post drawings, Frederator things, Pusheen stuff, Adventure Time and anything interesting to me.