In Boston, Celebration And Reflection As The Americans With Disabilities Act Turns 25

Marchers walk down Tremont Street near Boston Common to mark the 25th anniversary of the Americans with Disabilities Act. (Jesse Costa/WBUR)

Marchers walk down Tremont Street near Boston Common Wednesday to mark the 25th anniversary of the Americans with Disabilities Act. (Jesse Costa/WBUR)

Curb cuts, captions on TV, beeps that replace the “walk” sign for people who can’t see: all that has become commonplace in the 25 years since the Americans with Disability Act was passed.

But ask anyone who was in a wheelchair before 1990 and you’ll hear a story of frustration.

Rolling around city blocks, looking for a way to cross the street was a daily event. People crawled up stairs if they couldn’t find someone who could lift them and their chair. Or they’d order at a restaurant that insisted its bathroom was accessible, only to find it was not.

“[The ADA is] an appropriate thing to celebrate, but it was just a start. It has succeeded legally, but socially it has a long way to go.”

– William Peace

“That happened a lot, and still happens a little bit now, but back then that happened a lot,” said Christine Griffin, director of the Disability Law Center in Boston.

Griffin remembers arriving for a conference in the nation’s capital to find the hotel was not accessible. “I turned around and got back in a cab and I flew home,” she said.

The late Sen. Ted Kennedy told a congressional hearing back in 1988 that these stories had become too common.

“I bet if you go across this country, there really isn’t a member of a family or an extended family that hasn’t been touched,” said Kennedy, a chief sponsor of the ADA.

To build support for the act, supporters tied disability rights to civil rights.

“This change had an effect on people’s thinking,” Kennedy said in an interview 10 years after the law passed. “If you think of this as a continuation of the guarantee of equal rights, you come to different conclusions than if you’re looking at special legislation to try and look at some particular group.”

Now at the 25 year mark, disability advocates are celebrating and mapping their next steps. In Boston, about 2,000 people walked or rolled to Boston Common for a parade, speeches, music, dancing and crafts.

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Practicing Restraint In A No-Empathy Zone: At The Cancer Surgeon’s Office With My Son

Cathy Corman
Guest Contributor

I carry a genetic mutation increasing my risk of developing breast and ovarian cancer. My children have a 50 percent chance of inheriting the mutation. My 22-year-old son recently noticed a breast lump and asked me to join him when he met with a surgical oncologist to be evaluated.

The surgeon performed a skillful physical exam but provided neither effective risk assessment nor empathetic counsel. Afterward, I sent an email to friends briefly explaining what had gone wrong during the appointment. “We want to know how you managed not to hit him,” they asked. I did it by practicing restraint: slowly counting backwards from 10 and taking very deep breaths.

Here’s my countdown:

10. I did not correct the icy-blue-eyed surgeon with steel-grey hair and steady hands — 50? 60? — when he dissuaded my son from pursuing genetic testing. The surgeon had shaken my son’s hand, looked him in the eye, and palpated my son’s slender, muscular chest, identifying the small lump under my son’s left nipple. A positive finding of a mutation, the surgeon said, adjusting the top of his surgical scrubs, could expose my son to discrimination in the workplace and in obtaining health insurance. That is, I did not say, “The scenario you describe is illegal in this country.” As of March 23, 2010, with the passage of the Patient Protection and Affordable Care Act (aka “Obamacare”), if anyone were to attempt to discriminate against this young man in the workplace or in the process of applying for health insurance because of a positive finding for a genetic mutation (a pre-existing condition), this person would be subject to a massive lawsuit.

Cathy Corman (Courtesy)

Cathy Corman (Courtesy)

9. When this surgeon used the word “anxiety” for the eighth time to a) describe my son and myself and b) provide his vision of a course of action, I did not refer this man to Leslie Jamison’s collection of essays, “The Empathy Exams.”  “Empathy,” writes Jamison, “isn’t just remembering to say that must really be hard — it’s figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see…”

8.  I did not bring up this statistic: Though men make up only 1 percent of breast cancer diagnoses annually in the U.S., they may be up to 25 percent likelier than women to die from the disease, probably because of lack of awareness and late detection. Nor did I mention that generally male breast cancer presents with a detectable lump and is almost always linked to radiation exposure, unusually high levels of estrogen or a genetic mutation. Surely the surgeon knew these statistics? But my son did not. And I did not want to scare him.

7. I said nothing to this surgeon’s response to my son’s question, “But wouldn’t it be relevant to know if I carry the mutation?” His answer: No, you know you have a family history of breast cancer.

6. I said nothing when this surgeon dodged my son’s question: “If my grandfather didn’t have the mutation,” my son wanted to know, “wouldn’t he not have had breast cancer? And wouldn’t it be important for me to know if I carry the mutation, too, to assess my risk?” The surgeon’s reply: The only way you’ll know if you have cancer is to have the lump removed. The surgeon’s answer, while true, sidestepped the elephant in the room: whether my son carries a mutation elevating his risk of breast cancer.

5. When this surgeon ridiculed an actress whose name he could not remember for publicly disclosing her status as a mutation carrier and for undergoing prophylactic mastectomies, I offered him the actress’s name. Continue reading

Thousands Ruled Ineligible For Mass. Medicaid

Tens of thousands of people have been removed from the state’s Medicaid program during the first phase of an eligibility review, according to figures from Gov. Charlie Baker’s administration obtained by The Associated Press.

The eligibility checks, required annually under federal law but not performed in Massachusetts since 2013, began earlier this year as part of Baker’s plan to squeeze $761 million in savings from MassHealth, the government-run health insurance program for about 1.7 million poor and disabled residents.

At $15.3 billion, MassHealth is the state’s single largest budget expense.

Based on the results of the redetermination process so far, the state was on track to achieve the savings it had hoped for in the current fiscal year without cutting benefits for eligible recipients, said Secretary of Health and Human Services Marylou Sudders. Continue reading

Bristol County Suicide Spike Not Just ‘A Bump In The Road’

Bristol County is seeing a surge in suicides.

On Monday, the Bristol County Regional Coalition for Suicide Prevention and the Bristol County District Attorney’s office released data on the extent of the issue in the county.

In the last three and a half years, 171 people in the county have died by suicide.

  • 2012: 35 confirmed suicides; 25 men and 6 women
  • 2013: 44 confirmed suicides; 29 men and 15 women
  • 2014: 58 confirmed suicides; 50 men and 8 women

The rash of suicides in Bristol County has affected mostly men in their early- to mid-50s. The number of men who have died by suicide has increased 72 percent over the past three years. These men often suffer from depression and substance abuse. And when they seek help, they are unable to find inpatient residential care.

“What we have happening in Bristol Country is not a bump in the road, and what we have happening is not a pothole. We have a sinkhole happening here in this county,” said Annemarie Matulis, director of the Bristol Country coalition.

There have been 34 confirmed suicides, 22 men and 12 women, so far this year. This means the county is on track to match the 2014 statistics or potentially surpass them, the coalition and DA’s office announced Monday.

Matulis says people close to someone who has died by suicide become themselves more prone to taking their own lives.

Resources: You can reach the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) and the Samaritans Statewide Hotline at 1-877-870-HOPE (4673).

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Doctor: You Should Not Need Prescription To Treat Urinary Tract Infection

Cranberry juice is often recommended to help with UTIs. (Woo Woo/Flickr Creative Commons)

Cranberry juice is often recommended to help with UTIs. (Woo Woo/Flickr Creative Commons)

My friend was looking peaked and pained the other day. Today, she was vastly better.

“UTI,” she said, and I nodded knowingly. Urinary tract infections are so common that up to half of all women get them at some point. There are many wonderful things about being a woman; cystitis is not one of them.

It was no big deal. She called her doctor and the prescription was phoned over to her pharmacy. But a recent editorial in the British medical journal BMJ argues for an even simpler solution: She should have been able to just diagnose herself and pick up the treatment over the counter.

Dr. Kyle Knox, a general practitioner, writes that letting women treat UTIs without a prescription could cut 3 million unnecessary visits to the doctor each year in the United Kingdom. From the BMJ press release:

Acute uncomplicated urinary tract infections (AUUTIs) such as cystitis are the most common bacterial infections in women. Cystitis affects around half of women at least once in their lifetime and is coded as the reason for 1% of the 300 million GP consultations held annually in the UK.

Management of cystitis is straightforward – a short course of the antibiotic nitrofurantoin and symptoms usually start to improve after a day or two.

“Therefore, in an era of ready access to information, increasing patient autonomy, and overstretched primary care services, it would seem a good idea for women to be able to access safe and effective treatment without the costs and delays associated with consulting a clinician to obtain a prescription,” suggests Knox. Continue reading

Happy 100 To You, And You — Centenarians Multiply, At Forefront Of Age Wave

Ethel Weiss, 100, dances with her daughter Anita Jamieson at the “Party Of The Century” at the Brookline Senior Center on Wednesday. (Jesse Costa/WBUR)

Ethel Weiss, 100, dances with her daughter Anita Jamieson at the “Party Of The Century” at the Brookline Senior Center on Wednesday. (Jesse Costa/WBUR)

It’s a rare milestone, to turn 100 — but not nearly as rare as it used to be.

This week in the town of Brookline, Massachusetts, the senior center hosted more than a dozen local centenarians for a “Party of the Century.” In the not-so-distant past — centenarian parties in 2002 and 2007 — party organizers had to reach out to centenarians from all of Greater Boston to gather a critical mass for a fete.

But now, the 99-and-over set has so grown that the party had to limit itself to just Brookline, says Ruthann Dobek, director of the Brookline Council on Aging. And if the numbers keep growing, she told the crowd, “we’re going to have to start it at 105 or 110 to be eligible.”

The centenarians are the leading edge of the fastest-growing sector of the population: people over 60. In this state, the population over 60 has grown 17 percent over just the last five years, and the over-60 cohort will soon outnumber people under 20 for the first time in history, says David Stevens, the executive director of the Massachusetts Association of Councils on Aging. Continue reading

Study: Bottled Water Bans May Increase Consumption Of Sugary Drinks

The University of Vermont instituted a ban on the sale of bottled water in 2013. (Courtesy University of Vermont)

The University of Vermont instituted a ban on the sale of bottled water in 2013. (Courtesy University of Vermont)

By Marina Renton
CommonHealth Intern

Bans on bottled water are sweeping the nation, driven by concerns about the environment. But, according to a new study, the bans might bring some unintended consequences, including increased consumption of sugary beverages without a reduction in plastic waste.

The study, out in this month’s issue of the American Journal of Public Health, came from the University of Vermont, which instituted its own ban on the sale of bottled water in January 2013. Researchers found that more sugar-sweetened beverages were shipped to the campus following the ban — despite efforts to reduce the presence of unhealthy drinks — while the number of bottles shipped per person actually increased.

In 2008, the average American consumed 30 gallons of bottled water a year, or over 200 single-serve bottles. While no one can fault a preference for water over less healthy beverages, the plastic bottles are not environmentally friendly — about 2 million tons of polyethylene terephthalate (PET), the plastic commonly used in beverage containers, entered the waste stream in 2013, while far less, about 899 thousand tons, were recycled.

Recently, bottled water bans have been proposed in towns and on university campuses as a way of reducing plastic waste. In 2013, Concord became the first town in the country to ban the sale of plastic water bottles under 1 liter, and others have since followed suit. Colleges and universities around the country — including Brandeis, Emerson and Harvard — also have bans in place.

Before its ban was implemented, University of Vermont made an effort to increase the presence of healthy beverages on campus by enacting a 30 percent healthy beverage requirement, meaning that at least 30 percent of the drinks for sale on campus needed to fit certain criteria, said Dr. Rachel Johnson, a UVM professor of nutrition and co-author of the new study. Continue reading

Suicide Rate Among Men Spikes In Bristol County

The number of suicides among white men between the ages of 45 and 65 spiked 72 percent from 2013 to 2014 in Bristol County, which includes 20 towns southwest of Boston and along the south coast including Taunton, New Bedford and Fall River.

The figures come from the Bristol County Regional Coalition for Suicide Prevention, which gets its data from the district attorney’s office. Among all the suicide deaths in 2014 in that county, 87 percent were men. Advocates say the male suicide rate last year was significantly higher than the state average, and the trend is similar so far in 2015.

The alarming increase in suicides in Bristol County — most of them among middle-aged men — is leading suicide prevention advocates to team up with the district attorney to get out the word that there is help. On Monday, the suicide prevention coalition and Bristol County District Attorney Thomas Quinn will release more specific data on suicide in the county. In addition, the coalition will hold a series of community forums to discuss male depression and suicide.

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Opinion: It’s Time To Screen Teenagers At School For Risky Substance Use

By Dr. Eugene Beresin
Guest Contributor

Hearings are being held in the Massachusetts State House on a bill that would enable public school nurses to screen teens for the risk of substance use. This practice is strongly supported by the Children’s Mental Health Campaign and the Addiction Free Future Project, and part of a mission in five states to promote screening for teenagers at risk of substance use problems.

We favor broad screening as a way to reduce death and disability due to substance use that typically starts in the teen years. We understand that this screening will be totally confidential — like all substance use screening and discussions between teens and health care providers. However, parents are free to oppose the screening of their children just as they may prevent their children from receiving vaccinations.

The downside to screening raised by some is that it will bring additional costs to the state, including extra time for training and to administer the tests. In addition, some kids may feel discomfort being asked sensitive questions. However, the overall reduced costs of treatment are great. And most kids really are open to talking about substance use in a confidential setting.

There are certainly some people who do not feel school is a place for screening of any kind. But after looking at research on substance use disorder prevention, professionals at The MGH Clay Center for Young Healthy Minds, The MGH Recovery Research Institute and the Massachusetts Children’s Mental Health Campaign feel that the benefits of early screening far outweigh the financial cost and time factors involved. The risks of excessive substance use in teenage years is very dangerous to brain development and social functioning.

A new blog post by screening advocates John F. Kelly, Ph.D., founder and director of the Recovery Research Institute and associate director of the Center for Addiction Medicine at Massachusetts General Hospital, and Courtney Chelo, behavioral health project manager at the Massachusetts Society for the Prevention of Cruelty to Children (MSPCC) lays out the details: Continue reading

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Study: New Antibody Therapy Can Reverse Traumatic Brain Injury Damage (In Mice)

Cleveland Browns QB Jason Campbell lies near midfield after suffering a concussion in a game on Nov. 24, 2013. Traumatic brain injuries, whether they occur on a sports field or in a war zone, are on the rise. (David Richard/AP)

Cleveland Browns QB Jason Campbell lies near midfield after suffering a concussion in a game on Nov. 24, 2013. Traumatic brain injuries, whether they occur on a sports field or in a war zone, are on the rise. (David Richard/AP)

Traumatic brain injuries, whether they occur on a sports field or in a war zone, are on the rise.

What’s worse, these head traumas have been linked to long-term neurodegenerative diseases, notably Alzheimer’s and a condition known as chronic traumatic encephalopathy, or CTE.

Now, a team of researchers report they’ve discovered the “missing link” between traumatic brain injuries and these degenerative brain diseases and developed a special antibody that may help prevent the conditions — at least in mice.

In a study published online in the journal Nature, researchers at Beth Israel Deaconess Medical Center identify the “missing link” culprit as “cis P-tau, a misshapen and toxic species of tau protein that has not been previously identified,” says Kun Ping Lu, MD, PhD, the study’s co-senior author and chief of the Division of Translational Therapeutics in the Department of Medicine at BIDMC and professor of medicine at Harvard Medical School.

Lu, in an interview, explains how these toxic proteins can build up in the brain and start causing serious damage after repeated head injuries:

A single concussion, a mild traumatic brain injury (TBI), results in moderate induction of cis P-tau, which returns to the baseline within 2 weeks. However, repetitive concussions, as might occur in contact sports, result in robust induction of cis P-tau that is persistent for months in mouse brains. This is similar to what is produced following a single severe TBI caused by a blast, as seen in military blast, or an impact, as seen in a severe car accident. Strikingly, cis P-tau is produced as soon as 12 hours after TBI, setting in motion the destructive course of events that leads to Alzheimer’s and CTE.

cis P-tau protein is extremely neurotoxic, disrupting neuron structure and function, progressively spreading to other neurons throughout the brain over time, leading to neuron death. Therefore, cis P-tau has the ability to kill one neuron after another in the brain over time, eventually leading to Alzheimer’s and CTE. These results in animal models are consistent with clinical observations that either repetitive concussions or single severe TBI can lead to Alzheimer’s or CTE.

Importantly, our cis antibody is not only able to spot only the toxic cis P-tau, but also to neutralize its toxicity to neurons. As a result, treating TBI mice with cis antibody can stop brain damage after TBI and prevent its debilitating long-term consequence of Alzheimer’s and CTE. Thus, cis P-tau is an early driver of TBI and its related Alzheimer’s disease and CTE, which can be effectively blocked by antibody therapy.

The immediate implications of these findings are to emphasize TBI prevention; however, if concussion occurs, it is critically important to allow the body defense system to remove the toxic tau protein completely before another concussion occurs. The most exciting development will be to humanize our current monoclonal antibody to develop early intervention to treat TBI and to prevent Alzheimer’s disease and CTE, which can be done within next a few years. In addition, because the same toxic tau protein also destroys brain cells in Alzheimer’s, this early intervention may be used to treat this most common form of dementia in older individuals.

The BIDMC release also states that “Lu and Zhou have interests in Pinteon Therapeutics, Inc., which has licensed Pin 1 technology from BIDMC.” Continue reading