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Inspired By Family Illness, Philanthropist Gives $650 Million For Psychiatric Research

The Broad Institute of Harvard and MIT  summer student Lydia Emerson and aesearch associate Aldo Amaya. (Courtesy/Kelly Davidson Photography)

Researchers at the Broad Institute plan to use Ted Stanley’s money to catalog all the genetic variations that contribute to severe psychiatric disorders. (Courtesy/Kelly Davidson Photography)

In the largest-ever donation to psychiatric research, Connecticut businessman Ted Stanley is giving $650 million to the Eli and Edythe Broad Institute of MIT and Harvard. The goal — to find and treat the genetic underpinnings of mental illnesses — was inspired by a family experience.

Ted Stanley made his fortune in the collectibles business. He founded The Danbury Mint, a company (later MBI, Inc.) whose first product was a series of medals commemorating the biggest scientific achievement of its time: the moon landing in 1969. While his business grew, his son Jonathan Stanley grew up as a normal Connecticut kid. Until, at age 19, Jonathan came down with bipolar disorder with psychosis, which got worse over the next three years.

“We’ll call it the epiphany from my dad’s standpoint at least,” Jonathan Stanley remembered of the turning point in his illness. “I went three days straight running through the streets of New York, no food, no water, no money, running from secret agents. And not surprisingly, after I stripped naked in a deli, ended up in a psychiatric facility.”

Jonathan was a college junior at the time.

“My dad came to visit, and he got to see his beloved son in a straitjacket,” Jonathan Stanley said.

The Stanleys were lucky. Jonathan responded well to the lithium, then a newly-approved drug. He went on to graduate from college and law school, too. Yet along the way, his father had met other fathers whose sons did not respond to treatment. He met other families who had to keep living with uncontrolled mental illness.

Ted Stanley said that gave him a focus for his philanthropy.

There was something out there that our son could take, and it made the problem go away,” he said. “And I’d like to see that happen for a lot of other people. And that’s why I’m doing what I’m doing.”

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Boston Doc At AIDS Conference Reports Shock, Grief For Colleagues

A pro-Russian fighter inspects the site of a crashed Malaysia Airlines passenger plane near the village of Hrabove, Ukraine, eastern Ukraine Friday, July 18, 2014. (AP Photo/Dmitry Lovetsky)

A pro-Russian fighter inspects the site of a crashed Malaysia Airlines passenger plane near the village of Hrabove, Ukraine, eastern Ukraine Friday, July 18, 2014. (AP Photo/Dmitry Lovetsky)

Veronica Thomas
CommonHealth Intern

The 20th International AIDS Conference began Sunday in Melbourne, Australia, as attendees mourned the loss of colleagues in last week’s plane crash in Ukraine. Yesterday, the International AIDS Society released a statement confirming that at least six delegates traveling to the conference were onboard the Malaysian Airlines flight.

Dr. Dan Barouch, director of the Center for Virology and Vaccine Research at Beth Israel Deaconess Medical Center and a professor at Harvard Medical School who is attending the conference, said the attendees are reeling in disbelief.

“The mood is somber, people are in shock,” he told WBUR’s Kassandra Sundt. “And it’s certainly not the type of discussions that people were planning to have here.”

Despite the tragedy, he said there was no discussion of canceling the conference, which is scheduled to continue through Friday.

‘A lot of people’s lives are saved because of his work.’

“There are clearly statements of sorrow and condolences and moments of silence throughout the scientific sessions, throughout the conference dinners, and privately,” he says. “But from the start everyone acknowledged that it would be the desire of all those who died tragically in this plane crash to have the work go on.”

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Medical Marijuana 101: 10 Things You Should Know Before Using The Drug

As medical marijuana is introduced in Massachusetts, here are 10 things to know about using it.

Whether you are using marijuana for the first time, or trying it for a new ailment, those who praise its benefits say you should be prepared for a period of trial and error. Because:

1) What works for one patient may not work for you. The difference may be in the marijuana, but patients also respond to drugs differently based on age, race, gender, genetics and other factors. (The Food and Drug Administration takes many of these factors into account when testing legal drugs.)

2) All pot is not alike. Every strain of marijuana has a different balance of cannabinoids, the chemical compounds that are unique to marijuana, some of which have medicinal value. The two most common are THC, which can make people high, and CBD, which offsets the effects of THC and is believed to prevent muscle spasms and seizures.

3) Even within the same strain, the intensity of cannabinoids will vary. Take Blue Dream, one of the more popular strains these days. Blue Dream from one grower might have 5 percent THC, but if you change buyers, your next batch of Blue Dream might have 25 percent THC and produce a strong high. Continue reading

Medical Marijuana 101: What’s In Your Drug?

Jack Boyle reaches across the marble island in his kitchen for a small blue glass bottle with a black rubber cap. He holds it to the light, shaking the liquid, a marijuana concentrate.

“The person who made this didn’t make it properly,” Boyle says.

Boyle’s wife Susan Lucas uses the marijuana concentrate, or tincture, to prevent epileptic seizures. The first batch helped, so Boyle went back for more.

But then, “Sue started seeing her symptoms coming back,” he says. “We immediately took [the new batch] to the lab, had it tested. It didn’t have the CBD in it.”

The second batch, it seems, wasn’t heated enough to activate CBD, one of the compounds in marijuana that supporters say helps with muscle spasms and seizures.

Now Boyle is learning how to make a perfect concentrate on his own, in his kitchen in Stow. He bought a Crock-pot and found a recipe for marijuana tinctures online.

“I’ll make a batch and have Michael Kahn test it again, and if [it] matches up to at least as strong as the first batch then we’re good to go for six months to a year,” Boyle says. “It’s my wife, I just want to do the best I can.”

Michael Kahn is an analytical chemist and president of Massachusetts Cannabis Research, or MCR Labs, in Framingham. It’s the first marijuana testing lab to open in Massachusetts.

“We provide quality control,” Kahn says.

With all the attention to dispensaries that will grow and sell marijuana for medical use, the question of who will test the drug has been largely overlooked. The state Department of Public Health (DPH) is expected to issue testing protocols soon, but they may be a work in progress — at least for the first few years — as this industry takes shape across the country.
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New Concerns About Coakley-Partners Deal

There are new concerns about an agreement Attorney General Martha Coakley negotiated to try and control the prices and market power of Partners HealthCare. The implication, from a commission created to help reduce health spending, is that the deal does not go far enough.

“Without lasting change to the market structures,” the Health Policy Commission (HPC) writes in comments to be filed in court, “price caps may not be effective in keeping costs down.”

Price caps?

The commission dug in on a portion of the deal Coakley reached with Partners — the part that says network prices could not rise faster than inflation for six and a half years.

“Prices themselves, they are important,” said commission chairman Stuart Altman, “but they’re not the end of the game.”

To explain why, picture a colleague, neighbor, maybe your grandmother — someone who’s had hip replacement surgery. Now picture two hospitals.

“In one place,” said Altman, “a hip costs $10,000 to replace. In another, it’s $15,000.”

Under Coakley’s deal, prices at each of these Partners hospitals would rise slowly. But there’s nothing to keep Partners from sending more patients to the $15,000 facility. If more patients have hips replaced at the higher-cost hospital, then total health care costs would go up, even if prices don’t.

“Total medical expenditures, when we finally figure it out, is going to up by a lot, but yet the price increases were fine,” Altman said.

Coakley would have someone monitoring Partners, who could, in theory, intervene if a significant number of patients shift from lower- to higher-cost hospitals. But that monitor would only have access to spending for patients covered by a global budget, which Partners says is about 25 percent of its business.
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Judge Delays Review Of Partners HealthCare Deal

Update 6:35 p.m.: A judge has granted Attorney General Martha Coakley’s request for an extension. The comment period will now close Sept. 15, and Coakley will have until Sept. 25 to file comments from her office after seeing the full Health Policy Commission report. A new hearing has been set for Sept. 29.

Our original post continues:

BOSTON — Massachusetts Attorney General Martha Coakley is asking a judge to postpone reviewing a settlement between her office and Partners HealthCare that would allow the hospital network to acquire three new hospitals.

Massachusetts Attorney General Martha Coakley (Steven Senne/AP/File)

Massachusetts Attorney General Martha Coakley (Steven Senne/AP/File)

Coakley’s motion asks a judge to wait until September to hold a hearing on the deal, which aims to limit the market clout of the state’s largest hospital network in exchange for allowing it to acquire South Shore Hospital and Hallmark Health.

A spokesman for the attorney general says Coakley has seen findings from a preliminary review of the deal from the state’s Health Policy Commission, and she believes the court should consider the full report.

The statement reads in full:

Our office always retained the option to seek to renegotiate portions of this agreement as it relates to Hallmark following a Final Report by the Health Policy Commission.  After reviewing the preliminary findings by the HPC, we believe it is in the interest of the public and the parties involved to wait for the final report before any final consent judgment is considered by the court.

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Survey: Transgender Discrimination In Mass. Public Spots, Health Effects Seen

(Codep08/Compfight)

(Codep08/Compfight)

By Qainat Khan
WBUR

On a break from her job near South Station, Vivian Taylor was on her way in to use the station’s ladies’ room when a man suddenly blocked her way, she recalls.

“Where do you think you’re going?” he asked her, threateningly.

“I didn’t want to have a confrontation while I was at work, but it was a very unsettling experience,” said Taylor, a transgender woman who served in Iraq in 2009 and 2010. “For about the next half hour, that fella just stood there — as if he was on guard — standing there glaring at me in front of the door to the bathroom.”

A survey out today suggests Taylor’s experience is not uncommon. The results, based on 452 responses, show that almost two-thirds of transgender and gender non-conforming Massachusetts residents experienced discrimination last year in public places, including transportation, retail and health care settings.

The survey, conducted by The Fenway Institute at Fenway Health and the Massachusetts Transgender Political Coalition, found that respondents who reported discrimination had an 84 percent increased risk of adverse physical symptoms associated with stress — such as headaches, upset stomachs and pounding hearts — and a 99 percent increased risk of emotional symptoms compared to respondents who reported no such discrimination in the past year.

“It’s a hard thing to have to go through the world just having to be that conscious of your own safety,” Taylor, who was a respondent on the survey, said. “That’s a very stressful experience, to just always know that it’s possible that somebody is going to come after you for no other reason than what you look like, or how you dress, or what your voice sounds like.”

The survey also found that 20 percent of respondents postponed or did not seek health care because of prior discrimination in a medical setting. Five percent of respondents said a health care provider refused to provide them with care because of their gender identity. Continue reading

How Playing Music Affects The Developing Brain

A cellist at the Conservatory Lab Charter School in Boston plays during a recital rehearsal. Research has found music instruction has beneficial effects on young brains. (Jesse Costa/WBUR)

A bassist at the Conservatory Lab Charter School in Boston plays during a recital rehearsal. Research has found music instruction has beneficial effects on young brains. (Jesse Costa/WBUR)

Remember “Mozart Makes You Smarter”?

A 1993 study of college students showed them performing better on spatial reasoning tests after listening to a Mozart sonata. That led to claims that listening to Mozart temporarily increases IQs — and to a raft of products purporting to provide all sorts of benefits to the brain.

In 1998, Zell Miller, then the governor of Georgia, even proposed providing every newborn in his state with a CD of classical music.

But subsequent research has cast doubt on the claims.

Ani Patel, an associate professor of psychology at Tufts University and the author of “Music, Language, and the Brain,” says that while listening to music can be relaxing and contemplative, the idea that simply plugging in your iPod is going to make you more intelligent doesn’t quite hold up to scientific scrutiny.

“On the other hand,” Patel says, “there’s now a growing body of work that suggests that actually learning to play a musical instrument does have impacts on other abilities.” These include speech perception, the ability to understand emotions in the voice and the ability to handle multiple tasks simultaneously.

Patel says this is a relatively new field of scientific study.

“The whole field of music neuroscience really began to take off around 2000,” he says. “These studies where we take people, often children, and give them training in music and then measure how their cognition changes and how their brain changes both in terms of its processing [and] its structure, are very few and still just emerging.”

Patel says that music neuroscience, which draws on cognitive science, music education and neuroscience, can help answer basic questions about the workings of the human brain.
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Buffer Zone Ruling Aftermath: Street Scene At Clinic, New Bill Filed

Outside the Planned Parenthood clinic in Boston. (Photo: B.D. Colen)

Outside the Planned Parenthood clinic in Boston on Saturday. (Photo: B.D. Colen)

The 35-foot “buffer zone” outside the Planned Parenthood clinic on Commonwealth Avenue in Boston is gone, struck down by the Supreme Court’s buffer-zone ruling last month. But a bill filed today in the Massachusetts Legislature would restore some added protections to staff and patients at the state’s reproductive health centers.

Among them, Planned Parenthood writes, is police power to issue a “dispersal order” when a group has impeded access to a facility; a prohibition on using “threat or force to intentionally injure or intimidate” someone trying to enter or leave the facility; and a “clear passage” section that bans impeding anyone trying to come or go.

An opinion piece in the Boston Globe today argues that no anti-abortion protester has ever been arrested for committing violence, and that the buffer zone “restricts and punishes not violence but expression.”

The author might want to take a look here on socialdocumentary.net at the evocative photos shot at the clinic on Saturday by B.D. Colen, a former Pulitzer Prize-winning medical reporter who teaches documentary photography at MIT. True, no physical violence. But you can imagine what it’s like to be a desperate young woman who has to navigate through dozens of protesters and “counselors” to get into the clinic.

The photo set’s “Photographer’s Statement” includes a heart-wrenching letter from a former student of Colen’s, who speaks to the emotional effects of laws and rulings that can make an agonizing time even harder. An excerpt:

“No one gives us – young and old women – enough credit about how terrifying that whole process is – with or without protestors. When they changed the laws to force a woman to look at the sonograms before they’d do the procedure, I cried. I remember being asked if I wanted to see the sonograms – I remember saying no and meaning it. I’m glad that at the time my voice was heard and my opinion was respected. What a cruel unnecessary law. What a lack of understanding that law demonstrated…

“I wish I was in Boston right now. I’d sit out there on that street after work or on my weekends.

“People think that women who have unwanted pregnancies are stupid or careless. That’s so far from the truth that I want to laugh instead of cry. I wasn’t stupid or careless – and even if I was, that shouldn’t matter. Women’s bodies are built to get pregnant. No birth control is 100% effective. I always knew my body was a fighter and stubborn as hell. Now I have concrete proof.
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If You Find A Tick: Why I Resorted To Mooching Pills To Fight Lyme Disease

A March 2002 file photo of a deer tick under a microscope in the entomology lab at the University of Rhode Island in South Kingstown, R.I. (Victoria Arocho/AP)

A March 2002 file photo of a deer tick under a microscope in the entomology lab at the University of Rhode Island in South Kingstown, R.I. (Victoria Arocho/AP)

I’ve never done anything like this before. I’m a good little medical doobie. I’m wary of pills, take them only with prescriptions, and follow the instructions to the letter. But last month, I “borrowed” a friend’s extra 200 milligrams of doxycycline — the onetime antibiotic dose shown to help prevent Lyme disease soon after a prolonged tick bite.

What brought me to that desperate point? A doctor declined to prescribe the pills, even though this is prime Lyme disease season and the patient, my family member, fulfilled every one of mainstream medicine’s requirements for the single dose aimed at preventing Lyme. To wit:

• The tick was a fully engorged deer tick that had been attached for more than 36 hours.

• We sought treatment within three days of removing it.

• The tick came from a Lyme-endemic area.

• And the patient had no medical reason to avoid antibiotics.

The antibiotics I “borrowed” from a generous friend (Carey Goldberg/WBUR)

The antibiotics I “borrowed” from a generous friend (Carey Goldberg/WBUR)

But still. The doctor argued that the chances of contracting Lyme from the tick were very small, perhaps 1 in 50, and that overuse of antibiotics contributes to the growing problem of drug-resistant bacteria. This is what he would do for his own family member, he said: skip the doxycycline, wait to see if Lyme develops, and treat it with a full 10-day course of antibiotics if it does.

I was frustrated and frankly a bit appalled. WBUR ran a series on Lyme disease in 2012, and I knew that controversy raged around many aspects of the disease, particularly the use of long-term antibiotics to treat long-term symptoms. But I was just trying to follow the widely accepted guidelines written by the Infectious Disease Society of America, to be found in reputable medical venues like UpToDate. And I knew from that same series that Lyme is rife in New England, and so are personal stories of health and lives ruined or seriously harmed.

Still, maybe I was overreacting? I’ve since sought a reality check from three experts, including the lead author of the guidelines. And here’s what I come away with: No, I was not unreasonable in seeking the preventive doxycycline. Arguably, though I hate to admit it, the doctor was not being totally unreasonable in declining it. The guidelines say a doctor “may” prescribe the antibiotic; it’s not a “must.”

In the end, I think, the crux of the question may lie in how you see the doctor’s role: Is it to lay out the risks and benefits and then let the patient choose? Or to impose his or her own best medical judgment on the patient? (You can guess where I come down on that one.) Also, “better safe than sorry” tends to rule when it comes to my loved ones. But what if the risk is small and the benefit uncertain? Continue reading