A new drug shows that the price of hope is $750,000

Photos by Suzanne Kreiter/Globe Staff (left, center); Kim Raff/Special to the Globe (right)

The families of thousands of children who want Spinraza, a newly approved drug for spinal muscular atrophy, have faced hurdles ranging from slow ramp-ups at hospitals to resistance by health insurers spooked by the $750,000 list price for the first year.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/10/17/BostonGlobe.com/Metro/Images/turner101717BIZXXspinrazaday2main44.jpg At a UMass lab, a eureka moment

This creation story began in a lab at the University of Massachusetts Medical School in Worcester.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/11/16/BostonGlobe.com/Business/Images/mehmud_4.jpg ‘Five mils of this stuff is $125,000’

A neurologist and his patient coordinator scramble to launch a Spinraza program at Johns Hopkins where 80 patients remain on a waiting list.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/11/20/BostonGlobe.com/Business/Images/11-20-2017_sickelcell_02.jpg No miracle cure for rising drug costs

Conflicting interests in the health care industry make it difficult to reach a consensus on what to do.

Used syringes and needles are seen under a bridge at the Kabul river where many addicts gather in Kabul on April 20, 2014. The NEJAT Centre is an Afghan response to vulnerable Afghan people, working with the communities for the prevention, treatment and care of drug users and HIV/Aids patients. Afghanistan produces around 90 percent of all opiate drugs in the world, but only recently became a major consumer - out of a population of 35 million, more than a million are now addicted to drugs. AFP PHOTO/SHAH MaraiSHAH MARAI/AFP/Getty Images

AFP/Getty Images

Rise in HIV among drug users increases fears of new epidemic

Health officials are worried that young people, unschooled in safe injection practices, could spark an outbreak.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/17/BostonGlobe.com/Metro/Images/bags.jpg Mayor Walsh signs ban on plastic bags for Boston

Boston Mayor Walsh said he signed the bill despite concerns about the ban’s impact on the city’s low-income residents and seniors. The ban goes into effect next fall.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/11/11/BostonGlobe.com/National/Images/AFP_TI2OQ.jpg US soldier ambushed in Niger wasn’t captured, fought to the end

An American soldier killed in an ambush in Niger with three comrades wasn’t captured alive by the enemy or executed at close range.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/17/BostonGlobe.com/Politics/Images/6f9a6552-4309-4e6f-898f-d7075593e301.jpg Mueller unlawfully obtained emails, Trump transition team says

An organization that was part of President Trump’s transition team claimed Saturday that special counsel Robert Mueller III improperly obtained a trove of transition emails.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/10/BostonGlobe.com/National/Images/Rex_Senate_Republicancrafted_tax_cu_9252768N-4843.jpg Collins says tax reform includes proposals she fought for

Senator Susan Collins says the tax reform overhaul now contains proposals she backed concerning state and local taxes, retirement savings and medical expenses.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/17/BostonGlobe.com/Politics/Images/0fc9159418e14366980bf2651133f4f9-615162a024d34116a70e6256f302ab37-0.jpg Kremlin says Putin thanked Trump for CIA tip on bombings

Russian President Vladimir Putin called President Trump Sunday to thank him for a CIA tip that helped thwart a series of bombings in St. Petersburg, the Kremlin said.

analysis

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/16/BostonGlobe.com/National/Images/ebcca35f7abc49009ce8925936635082-ebcca35f7abc49009ce8925936635082-0.jpg Trump’s greatest mission: erasing Obama’s legacy

Some attempts have failed, but the intensity of the president’s anti-Obama movement has never ebbed.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2015/02/11/BostonGlobe.com/Travel/Images/4a50e0375dc24ad785c5a67de3bdea5a-4a50e0375dc24ad785c5a67de3bdea5a-0.jpg Power outage halts flights at Atlanta international airport

Authorities say a power outage at the Hartsfield-Jackson Atlanta International Airport has caused flights to be suspended.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/11/BostonGlobe.com/Metro/Images/12-09-17__07.jpg Dreams of peace, family felled by gunfire

Despite efforts to get him out of Bowdoin-Geneva, Natalino Gomes could not leave his neighborhood.

Patriots at Steelers

New England Patriots running back Rex Burkhead (34) scores during the first half of an NFL football game against the Pittsburgh Steelers in Pittsburgh, Sunday, Dec. 17, 2017. (AP Photo/Keith Srakocic)

Keith Srakocic/AP

live updates

Steelers even the score against the Patriots

Ben Roethlisberger found Eli Rogers for an 18-yard touchdown to even the score and cap an eight-play, 69-yard drive.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/17/BostonGlobe.com/Sports/Images/davis_nepittpre6A_spts.jpg Boos? Brady tells Steelers fans to bring them on

The Patriots quarterback responded as he hit the field before Sunday’s game in Pittsburgh.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/17/BostonGlobe.com/Sports/Images/334ff861e9aa40049348caf9d294c71f-334ff861e9aa40049348caf9d294c71f-0.jpg Ryan Shazier makes appearance at Heinz Field

The injured Steelers linebacker was shown in a suite at the Patriots-Steelers game.

Perspective | Magazine

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/12/BostonGlobe.com/Magazine/Images/perspective1217mag.jpg ‘All over America dudes like me are being pressed to confront our privilege. And. We. Are. Freaking. Out.’

From birth, we get benefits no one else can touch. And it just gets better from there. We need to own up, and share the wealth.

TALKING SHOP

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/13/BostonGlobe.com/Business/Images/Boston%20Newbury%20Street_ext%20senza%20cartiglio.jpg Bulgari may make Newbury Street even more luxurious

High-end jeweler aims to open a store on Boston’s Newbury Street.

TORONTO, CANADA - SEPTEMBER 2017: In this undated handout photo released by Kensington Palace, courtesy of the Obama Foundation, Prince Harry interviews former US President Barack Obama as part of his guest editorship of BBC Radio 4's Today programme which is to be broadcast on December 27, 2017. The interview was recorded in Toronto in September during the Invictus Games. The conversation with the former President includes his memories of the day he left office and his hopes for his post-presidential life, including his plans to focus on cultivating the next generation of leadership through the Obama Foundation. (Photo by The Obama Foundation via Getty Images) NOTE TO EDITORS: This handout photo may only be used in for editorial reporting purposes for the contemporaneous illustration of events, things or the people in the image or facts mentioned in the caption. Reuse of the picture may require further permission from the copyright holder.

Prince Harry interviews Obama for radio show

In a video clip on the BBC website showing Harry and President Barack Obama warming up ahead of the chat, Obama joked: ‘‘Do I need a British accent?’’

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/17/BostonGlobe.com/Arts/Images/200_trump_snl.jpg It was a Merry Christmas in the Oval Office on ‘Saturday Night Live’

Scarlett Johansson reprised her portrayal of Ivanka Trump, and Alec Baldwin again played the president.

After a meeting voting to end net neutrality, Federal Communications Commission (FCC) Chairman Ajit Pai answers a question from a reporter, Thursday, Dec. 14, 2017, in Washington. (AP Photo/Jacquelyn Martin)

‘A Jedi You Are NOT’: Mark Hamill slams light saber-wielding FCC chairman over net neutrality

The scene Hamill publicly took issue with was one in which Ajit Pai donned a black hoodie and swung a light saber around while the ‘‘Star Wars’’ theme played.

Critical moment



Boston. Racism. Image. Reality.

Audience members at the city’s dialogue on race listened to a speaker.

Spotlight series a topic in city’s second major dialogue on race

Mayor Marty Walsh fielded questions on racial disparity, the Globe’s series on racism, and school start times, among other topics.

Part seven: Solutions

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/16/BostonGlobe.com/Metro/Images/Clipboard-11642.jpg A better Boston? The choice is ours

There have been years of halting progress, steps forward and back. It is high time to break that pattern.

DANTE RAMOS

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/15/BostonGlobe.com/EditorialOpinion/Images/dante-3753-khvB--90x90@BostonGlobe.com.jpeg In Allston, the transit lesson we never learn

It was bad enough the first time Boston built a whole new neighborhood and forgot about transit.

Bostonian of the Year

The Teacher

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/12/BostonGlobe.com/Magazine/Images/teacher1217alt.jpg Sydney Chaffee: The charter school teacher who got the nation’s attention

With state and now national honors under her belt, she’s teaching other schools what she knows about how students can change the world.

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/WebGraphics/Sports/BostonGlobe.com/2016/01/20moresports/seasonticket_90.jpg The Season Ticket podcast

Guest host Chad Finn chats with NFL analyst and former Pittsburgh Steelers head coach Bill Cowher.

Follow:   iTunes   |   Stitcher   |   RSS

 

Opinion & Ideas

Ideas | Sharon Begley

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/14/BostonGlobe.com/Ideas/Images/AP_132860394523.jpg Does mental illness show up in tweets?

The flaws of in-person exams are no surprise to experts.

Newsletters

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/05/BostonGlobe.com/EditorialOpinion/Images/MichaelCohenNewsletterHP-3632.jpg Truth and Consequences

Opinion columnist Michael Cohen takes a candid and no-holds-barred look at the current political moment. Sign up now.

Special reports

Magazine | A nonfiction novella

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/11/01/BostonGlobe.com/Magazine/Images/muck1105altimage-2940[1].jpg He put BSO on the map — then landed in a world of trouble

One hundred years ago, one of the world’s top conductors was ensnared in a scandal involving patriotism and sex. It almost toppled Boston’s famed orchestra.

Breaking News Alerts

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Confidential tips

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/05/22/BostonGlobe.com/Business/Images/spotlight.jpg Have an investigative news tip?

Do you know about wrongdoing that needs to be exposed? Call the Globe Spotlight team: 617-929-7483 or spotlight@globe.com.

STAT

//c.o0bg.com/rf/image_90x90/Boston/2011-2020/2017/12/15/BostonGlobe.com/National/Images/metoo%20biomedical%20science.jpg In wake of #MeToo, a new spotlight on harassment in biomedical science

Dr. Reshma Jagsi published a survey last year on harassment in the lab, and has found her research has gotten a second life.