A “computer algorithm failure” in the U.K. kept hundreds of thousands of women from getting notified it was time for a mammogram, potentially shortening the lives of up to 270 women, the National Health Service says.

The U.K. sends letters to women who are due for breast screening, according to British national guidelines, which call for exams every 3 years for women age 50-70. Because of the computer glitch, an estimated 450,000 women in England around the age of 70 did not receive their mammogram invitation.

Health Secretary Jeremy Hunt announced the “serious failure” on Wednesday, apologizing to the women affected.

“At this stage it is unclear whether any delay in diagnosis will have resulted in any avoidable harm or death,” Hunt said.

An independent review will work to answer that question, but in the meantime, preliminary statistical models show that as many as 270 women may have “had their lives shortened as a result” because of the glitch, Hunt said.

David Spiegelhalter, a British statistician, notes that Hunt’s announcement could be misinterpreted to mean hundreds of women died because of missed mammograms. But the total number likely includes women who have not yet died.

None of that takes away from the fact that the government made a painful mistake, Spiegelhalter said.

“There is no doubting that Jeremy Hunt needed to make a strong apology,” he wrote.

The government says new screening notifications will be sent English women 70-72 who missed their notifications. For older women, for whom the benefit of such screenings is less clear, optional screenings will be available.

The Times reports that the NHS and Public Health England, which administers the screening problem, are pointing fingers at each other, with each group suggesting the other body is to blame for the glitch.

Meanwhile, the Royal College of General Practitioners says “the priority should not be to establish blame” but rather to address the demand for mammograms and prevent such a problem in the future.

In the United States, which does not have a universal health care system like the U.K., there is no equivalent centralized process for notifying women they are due to have a mammogram.

Otis Brawley, the chief medical officer of the American Cancer Society, tells NPR that some HMOs and mammogram facilities will send out reminders, but it’s not typical.

“The overwhelming majority of women in the United States, it’s expected they or their physician will remember when it’s time to get a mammogram,” Brawley says.

And the need for screenings in older women, like those affected by the U.K. debacle, is not widely discussed, Brawley says — even though 50 percent of breast cancers are diagnosed in women age 67 or above.

However, as a woman gets older, a breast cancer detected by a mammogram is also less likely to end her life, Brawley notes. Meanwhile, unneeded treatment of such cancers could have serious side effects, as NPR’s Rob Stein reported last year.

That’s why the U.K. stops testing women in their 70s, and why the ACS doesn’t recommend mammograms for women with a life expectancy of 10 years or less.

Brawley also emphasizes that many women diagnosed with cancer find the cancer themselves, and encouraged all women to be aware of any changes in their breasts.

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Updated at 11:50 a.m. ET

Three national reproductive rights groups are suing the Trump administration, arguing that changes to the federal Title X program will put the health of millions of low-income patients at risk by prioritizing practices such as the rhythm method over comprehensive sexual health services.

The two lawsuits filed Wednesday — one by about the state budget here: https://t.co/GAD5jYtjpA

— Gov. Pete Ricketts (@GovRicketts) April 4, 2018

When an inmate needs to see a medical specialist, getting that care can be complicated.

Prisons are often located in rural areas far from medical centers that have experts in cancer, heart and other disease treatments. Even if the visit just involves a trip to a hospital across town, the inmate must be transported under guard, often in shackles.

The whole process is expensive for the correctional facility and time-consuming for the patient.

Given the challenges, it’s no wonder many correctional facilities have embraced telemedicine. They use video conferencing to allow inmates to see medical specialists and psychiatrists without ever leaving the facility.

A survey by the federal Centers for Disease Control and Prevention of prison health care in 2011 found that 30 states out of 45 that responded said they used telemedicine for at least one type of specialty or diagnostic service. The participating states reported that telemedicine was most commonly used for psychiatry (62.2 percent) and cardiology (26.6 percent), according to the research, which was published in 2016.

Among the corrections facilities offering these services is Rikers Island, which houses nine jails on an island near LaGuardia Airport in New York City. It recently began to provide telehealth services for female inmates who need oncology, rheumatology and hematology services. Other specialties are expected to be added in the future.

Male inmates on Rikers have been receiving telehealth services since 2016. Roughly 40 inmates have virtual visits each month with specialists in those same areas as well as infectious disease, urology, dermatology, pulmonology and gastroenterology.

“Initially we implemented [telehealth] for the efficiency part, to avoid hours of transport,” says Dr. Ross MacDonald, chief medical officer for NYC Health + Hospitals/Correctional Health Services, which runs the health care services at Rikers. “But what we’ve learned over time is that it really improves clinical care.” Telehealth allows the referring physician at the jail to consult with the specialist at the hospital as a team, and together clarify information for the patient, MacDonald says.

When the jail’s primary care provider identifies a medical concern that requires a specialist’s attention, the provider will accompany the patient to the jail’s medical clinic and together they’ll consult with a specialist at NYC Health + Hospitals/Elmhurst in Queens who is visible on the monitor. If the patient’s vital signs need to be checked or if she needs other tests, the primary care provider can handle that and communicate results with the specialist.

If after that meeting, a face-to-face exam with the specialist is necessary, that would be scheduled, MacDonald says.

“This is not meant to replace in-person visits, it’s meant to complement them,” he says.

Still, some prisoner advocates worry about the increasing use of telemedicine. Khalil Cumberbatch says he’s concerned that the video visits may heighten inmates’ feelings of isolation. Cumberbatch spent nearly a year on Rikers Island, first as he awaited trial on first-degree robbery charges in the early 2000s and later when he appealed his conviction.

He now works as the associate vice president of policy at the Fortune Society, a nonprofit organization that supports efforts to help prisoners re-enter society after incarceration.

“You’re removing contact with the outside world,” he says. “There’s a level of engagement that can be lost when you’re doing it on the screen.”

But for sick prisoners, that may not be a priority, others say.

“Lots of them don’t want to go to the outside facility,” says Dr. Edward Levine, the medical director for prison care for Ohio State University Wexner Medical Center, which has been doing telemedicine with the Ohio Department of Rehabilitation and Correction since 1995. “These people are sick. They have to get on a bus, it’s bumpy, and there are delays, and if [they’re] not feeling well, they don’t like it.”

Levine estimates he sees up to 150 gastroenterology patients a year at Ohio’s 29 prisons through telemedicine visits. “You develop a relationship with them the same as you would if you saw them in a clinic,” he says.

Although inmates may owe copayments if they see a doctor or nurse for run-of-the-mill aches and pains, they won’t generally have to pay for specialty care, whether provided on-site or through telemedicine, says Dr. Anne Spaulding, an epidemiologist and associate professor at Emory University’s public health school in Atlanta who has worked as a medical director in corrections. That’s because a medical provider typically initiates specialty care. Inmates are more commonly charged for medical visits that they initiate, she says.

Telemedicine can improve continuity of care and help patients keep chronic conditions under control. In one study of HIV-infected adults incarcerated at Illinois Department of Corrections facilities, 91 percent of telemedicine patients achieved complete suppression of the virus during the first six visits, compared with 59 percent of patients who received standard care on-site at the facilities. The study credited the results to having specialists provide evidence-based, up-to-date care through telemedicine, rather than relying on primary care physicians at the correctional facilities.

“If we can see them in real time without having to leave the facility, we get better outcomes,” says Dr. Jeremy Young, an infectious-disease specialist and associate professor of medicine at the University of Illinois at Chicago, who was the lead author of the study.

Kaiser Health Newsis a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation which is not affiliated with Kaiser Permanente.Follow Michelle Andrews on Twitter: @mandrews110.

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A viral video from Baltimore is drawing attention to a crisis that’s unfolding in emergency rooms across the country: Surging numbers of patients with psychiatric conditions aren’t receiving the care they need.

On a cold night in January, a man walking by a downtown Baltimore hospital saw something that shocked him. He started recordingthe incident on his phone.

Imamu Baraka’s video, which has been viewed more than 3 million times, shows security guards walking away from a bus stop next to the emergency room of University of Maryland Medical Center Midtown Campus.

One is pushing an empty wheelchair. The woman they left there is wearing a thin yellow hospital gown and socks.

“Wait, so you’re just going to leave this lady out here with no clothes on?” Baraka asks the guards. They continue walking away.

The woman, later identified as a 22-year-old named Rebecca, staggers near the bus stop. She appears distressed and confused. She moans and shouts.

“Are you OK, ma’am? Do you need me to call the police?” Baraka asks.

Nationwide, hospitals are struggling to provide services to people with psychiatric emergencies. Between 2006 and 2013, ER visits increased by more than 50 percentfor psychoses and bipolar disorders and depression, anxiety and stress reactions according to the Healthcare Cost and Utilization Project, which compiles health care data. Between those years the number of visits climbed from 3,448 visits to 5,330 per 100,000 U.S. patients ages 15 and older.

“We’re just failing patients with mental illness and it’s just getting worse as time goes on,” says Dr. John Rogers, president-elect of the American College of Emergency Physicians.

In the viral video, Rebecca has a visible wound on her forehead, and her breath forms white clouds in the cold. Baraka calls for an ambulance, which brings her back to the hospital that just discharged her.

Rebecca’s mother, Cheryl Chandler, says she happened to click on the video, not knowing it showed her daughter. “Once he focused on her face I realized it was her. And I think I went into shock initially,” Chandler says.

That realizationset off a desperate search. The hospital wouldn’t tell her where she was. Chandler called the police. They found out that the hospital didn’t readmit Rebecca, even though according to a federal regulator’s report, Rebecca told workers in the ambulance, “I do not feel normal, and do not know what normal is.”

Hospital staff put her into a cab that took her to a nearby homeless shelter, where family members found her the next day. She’s been hospitalized on and off since the incident.

“She could have got hypothermia. She could have died. She could have been raped, she could have been killed,” Chandler says. “All she wanted was treatment and they had two opportunities to do it and denied it both times.”

Rebecca was clearly asking for medical care, her mother says, which ERs are legally required to provide.

“That, what I saw in the video, was my worst nightmare for Rebecca,” Chandler says. Several years ago, Rebecca was diagnosed with bipolar and schizoaffective disorders. Her mom adds that she’s a shy and lovable introvert who loves animals and making art.

Rebecca has insurance and had been in a residential home when she went missing, Chandler says.

The hospital has apologized and says it has already put in place measures to correct the issues.

Chandler says she hopes that means it won’t happen to other patients. But she adds that Rebecca will continue to suffer from the hospital’s decisions: “No part of Rebecca, because of this, is going to heal. No part. We can’t make the scars go away.”

James E. Farmer, a lawyer for Rebecca’s family, says they’re investigating now and considering filing lawsuits. “It’s going to be difficult to determine the exact extent of harm to Rebecca,” he says. “I could not imagine the psychological damage and harm that was done as a result of this.”

The Centers for Medicare & Medicaid Services says the hospital failed to discharge the patient safely, among other breaches.

According to the federal regulator’s report, Rebecca was “resistant to discharge and refused to get dressed into street clothes when requested by nursing.” The hospital stated there was a “communication failure” which led to her discharge into the cold weather, though the report says it is not clear whether nursing or security staff made that decision.

Chandler says she’s heard from other families with similar stories: “The only difference is it wasn’t caught on video.“

“They told me to leave”

Here’s another story from Baltimore, about Laura Pogliano and her son Zaccaria. Zac, who had schizophrenia, died in 2015 of heart failure when he was 23.

Zac was sensitive and empathetic, and loved playing the piano, his mother says. He started to show symptoms of the disease when he was 16. He became paranoid, and started doing things like hiding kitchen implements out of fear that someone was trying to kill his family.

“His personality just drastically changed,” Pogliano says. “He had a thousand rituals around things so that he wasn’t harmed.”

Then, as part of his illness, Zac started to think that he actually did have dramatic injuries. Like a gunshot wound or a pulverized ankle. He’d call 911.

“He got to the point where he would pick up the phone at the drop of a hat and say, can someone come and help me, I’m having a heart attack,” Pogliano says.

This happened about 20 times in the two years before his death, she says. Often, ambulances took Zac to Good Samaritan Hospital, where Pogliano says the doctors would typically call her to let her know he arrived and would provide appropriate care for him. Later, hospital staff would call her to pick him up.

But one night after Zac went to the ER, Pogliano woke up hours later and got worried that she hadn’t received a call.

“I just got in the car and drove over there, and he was sitting outside. It was early spring but it was still wintery, probably 40 degrees out, 45 degrees out,” she says.

“All he had on was what he wore to the hospital, which was a pair of white linen shorts. I know he didn’t have shoes on. … And a hospital gown and no shirt. I said to him, ‘Oh my gosh, what are you doing here?’ He said, ‘They told me to leave.’ “

A hospital spokeswoman acknowledged that Pogliano was a patient there but says she found no indication that he was ever inappropriately evaluated or mistreated. She says she couldn’t comment further because of federal privacy laws.

Emergency room doctors are frustrated at the growing gap in care for patients with psychiatric disabilities.

“We’re kind of tired of waiting for legislators and regulators to act and to meet their responsibility to these patients in the form of providing funding for resources,” says Rogers, the president-elect of the American College of Emergency Physicians.

Even as there is increasing demand, there are fewer resources to care for psychiatric patients. It can be difficult for doctors to find an inpatient bed — the numbers are have decreased dramatically over the decades. Rogers says there have been significant cuts to community and outpatient resources — so the emergency department is often the only place for psychiatric patients to go.

“Every emergency physician in the country knows this problem well and wants to do something about it,” Rogers says.

Often the ER is not properly equipped with staff that can offer treatment to psychiatric patients. The emergency room’s mission is to assess and stabilize, but the actual care they can provide psychiatric patients is fairly limited. A 2008 survey of ER doctors found that 62 percent of them said there were no psychiatric services provided while the patients were in the ER.

“And the disparity between our ability to care for a patient with a medical problem and a patient with a psychiatric problem is growing, that gap is increasing,” Rogers says.

He says Rebecca’s case is an outlier. More common, he says, is that ERs will hold patients for too long before they can transfer them somewhere that can treat them. In a recent poll of emergency physicians, 84 percent said that psychiatric patients are “boarded” in their departments for hours or days. Rogers says he’s heard of patients being held for weeks.

And the options for where to transfer them are often limited. “And that’s where it starts breaking down,” he says. “The time that it takes to get someone transferred for something like that is just unacceptable….They wait, and wait, and wait.”

It’s a bad situation for everyone – for patients with psychiatric disabilities, and for other patients who have lengthy wait times because ERs are overwhelmed.

“They’re being asked to do way too much with way too few resources,” says Susan Stefan, a lawyer focusing on rights of people with psychiatric disabilities. ERs “have a specific mission, which is to provide emergency medical care, and they’re being turned into essentially 24-7 social service agencies.”

Stefan, who wrote a book about treating psychiatric patients in ERs, says it’s common for them to transfer people to homeless shelters because they are not equipped to find people stable housing.

And there’s another crucial point here: The ER is simply a bad place to treat severe mental illness, even as it is becoming increasingly central for those patients.

“The emergency department is probably the worst place for somebody in psychiatric crisis,” Stefan says. “It’s loud, it’s chaotic and people don’t take a lot of time because they don’t have a lot of time.”

And it’s not straightforward to transform an ER into a place that is appropriate to provide treatment to people who are in the middle of psychiatric crises — although there are hospitals that are experimenting with new models to better serve these patients.

The Alameda Health System in Alameda County, Calif., is a model that both Stefan and Rogers point to. There, a doctor named Scott Zeller has set up a dedicated psychiatric emergency service — a department separate from the standard emergency room that can provide specialized evaluation and treatment for these patients.

The Alameda model reduced boarding times by 80 percent, according to a study published in the Western Journal of Emergency Medicine, and the fast, stabilizing treatment made it far less likely that the patient would need to be transferred to an inpatient bed.

If there were adequate services in place, most of the people coming to ERs for psychiatric crises wouldn’t need to come there at all, says Jennifer Mathis, the director of policy and legal advocacy at the Bazelon Center for Mental Health Law.

“And much as everybody loves to talk about the need for mental health services, that doesn’t translate into state policy and funding for community mental health services,” she says.

The problem here, Mathis says, is political will. There’s a big gap between politicians talking about mental health and actually making sure people are getting the services they need.

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In 2010, 18-year-old Damian Turner was shot in the South Side of Chicago, just a few blocks away from the world-class University of Chicago hospital. But the ambulance that arrived to help him couldn’t take him there, because the hospital didn’t have an Level 1 adult trauma center.

Instead, it drove the gravely injured Turner nine miles to Northwestern University hospital, where he died from his wounds.

Turner’s death mobilized South Side young black activists. For years, they demanded that the University of Chicago reopen an adult trauma center that had closed in 1988 after losing millions of dollars each year treating patients without health insurance.

After years of resistance, the university is reopening its adult trauma center on May 1 — a decision that will provide the South Side with more accessible trauma care.

“There are a lot of trauma-related deaths because gun violence is such a prevalent issue on the South Side. It was then it is now. It has been for decades,” said activist Veronica Morris-Moore.“A lack of a trauma center was a severe indication of the institutional racism that existed on the South Side. And the reason it was worth our time as young people was because we were losing friends.”

Research backs Morris-Moore up: If you are shot more than five miles from a trauma center in Chicago, your likelihood of dying is 21 percent greater.

The university’s effort to reopen the center received a boost in 2015 when it made a bid for the Obama Presidential Center. That year, in an about face, the university said it would again open a trauma center.

Trauma care is costly complex web of care treatment lots of specially trained surgeons and nurses who treat penetrating wounds — from car crashes, stabbings to serious falls to gunshots. New staff have been hired, a new emergency room in the hospital opened in December and the state public health department approved trauma care earlier this month.

The new center’s head, Dr. Selwyn Rogers, said he will also work with local groups on social services centered around violence in addition to providing care.

“We bring together the resources of the university, medical center and community partners so that we can be better able to address health disparities and the public health epidemic of intentional violence,” Rogers said.

One of those community partners is Julian DeShazier, the pastor of University Church, which is not affiliated with the university. Activists used this church as a meeting space when they were planning strategy.

“Once we got on board it took on another dimension. We began to talk about it from different angles in terms of faith, and use our resources and access to try to help their voices be heard more,” DeShazier said. “We were able to help mediate conversations between medical center executives and the organizers on the ground doing that work. That’s the kind of work churches can do when they’re really rooted inside of a community.”

The hospital estimates the trauma care will cost $48 million a year. While trauma injuries are unpredictable, officials say the new trauma unit could treat up to 4,000 patients yearly starting next Tuesday.

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This story was co-published with ProPublica.

Doctors would see new mothers sooner and more frequently, and insurers would cover the increased visits, under sweeping new recommendations from the organization that sets standards of care for obstetrician-gynecologists in the U.S.

The 11-page “committee opinion” on “Optimizing Postpartum Care,” released today by the American College of Obstetricians and Gynecologists (ACOG), represents a fundamental re-imagining of how providers, insurers and patients can work together to improve care for women after giving birth.

“To optimize the health of women and infants, postpartum care should become an ongoing process, rather than a single encounter, with services and support tailored to each woman’s individual needs,” the committee opinion states.

While an ACOG task force began rethinking its approach several years ago, the guidelines arrive at a moment of mounting concern about rising rates of pregnancy-related deaths and near-deaths in the U.S. As ProPublica and NPR have reported, more than 700 women die every year in this country from causes related to pregnancy and childbirth and more than 50,000 suffer life-threatening complications, among the worst records for maternal health in the industrialized world. The death rate for black mothers is three to four times that of white women.

The days and weeks after childbirth can be a time of particular vulnerability for new moms, with physical and emotional risks that include pain and infection, hypertension and stroke, heart problems, blood clots, anxiety and depression. More than half of maternal deaths occur after the baby is born, according to a new CDC Foundation report.

Yet for many women in the U.S., the ACOG committee opinion notes, the postpartum period is “devoid of formal or infor­mal maternal support.” This reflects a troubling tendency in the medical system — and throughout American society — to focus on the health and safety of the fetus or baby more than that of the mother. “The baby is the candy, the mom is the wrapper,” said Alison Stuebe, who teaches in the department of obstetrics and gynecology at the University of North Carolina School of Medicine and heads the task force that drafted the guidelines. “And once the candy is out of the wrapper, the wrapper is cast aside.”

The way that providers currently care for pregnant women and infants versus new mothers exemplifies this difference. During the prenatal period, a woman may see her ob-gyn a dozen or more times, including at least two checkups during her ninth month. Her baby’s first pediatric visit usually occurs a few days after birth. But the mother may not have a follow-up appointment with her own doctor until four to six weeks after delivery — and in many cases, insurance only covers one visit. “As soon as that baby comes out, [the mom] is kind of an afterthought,” said Tamika Auguste, associate medical director of the MedStar Health Simulation Training & Education Lab in Washington, D.C., and a coauthor of the ACOG opinion.

For working mothers, having to wait four to six weeks makes it harder to arrange a check-up.

Some 23 percent of mothers employed outside the home are back on the job within 10 days of giving birth, a 2014 report for the U.S. Department of Labor found; another 22 percent return to work within 40 days. Lack of childcare and transportation can also present significant hurdles to accessing care. According to ACOG, as many as 40 percent of women skip their postpartum visit; for low-income women of color, the rates are even higher.

“You may have a woman that has asthma, is having problems lactating, and is obese, and when they come to see you at six weeks, we have missed the boat here,” Auguste said.

Nor is a single visit enough time to address a new mother’s questions and concerns, especially if she had a complicated pregnancy or is suffering from chronic conditions such as hypertension, diabetes or a mood disorder. “We’re trying to address all of the issues that women are dealing with after having a baby in one 20-minute encounter,” Stuebe said. “And that’s really hard to do.”

Under the new ACOG guidelines, women would see their providers much earlier — from within three days postpartum if they have suffered from severe hypertension to no later than three weeks if their pregnancies and deliveries were normal— and would return as often as needed. Depending on a woman’s symptoms and history, the final postpartum visit could take place as late as 12 weeks after delivery and ideally would include “a full assessment of physical, social, and psychological well-being,” from pain to weight loss to sexuality to management of chronic diseases, ACOG says.

In another significant change, ACOG is urging providers to emphasize in conversations with patients the long-term health risks associated with pregnancy complications such as preterm delivery, preeclampsia and gestational diabetes. “These risk factors are emerging as an important predictor of future [cardiovascular disease],” the recommendations state. “…[B]ut because these conditions often resolve postpartum, the increased cardiovascular disease risk is not consistently communicated to women.”

Earlier, more frequent and more individualized care could be a step toward addressing the stark racial disparities in maternal and infant health, said ACOG’s outgoing president, Haywood Brown, who has made reforming postpartum care one of the main initiatives of his term. Black mothers are at higher risk for many childbirth complications, including preeclampsia, heart failure and blood clots, and they’re more likely to suffer long-lasting health consequences. They also have higher rates of postpartum depression but are less likely to receive treatment. Regardless of race, for women whose pregnancies are covered by Medicaid, the postpartum period may be their best opportunity to get help with chronic conditions before they lose insurance coverage.

The new guidelines urge doctors to take a proactive approach, helping patients develop a postpartum care plan while still pregnant, including a team of family and friends to provide social and other support. According to ACOG, one in four new mothers surveyed recently said they didn’t even have a phone number of a health care provider to contact with concerns about themselves or their babies.

ACOG isn’t the only organization calling for a reinvention of postpartum care; patient-safety groups, researchers, nurses and midwives have also tackled the issue, recasting the three months after birth as akin to a “fourth trimester.”

“The postpartum period has become a priority,” said Debra Bingham, a professor of nursing at the University of Maryland and executive director of the Institute for Perinatal Quality Improvement who has participated in many of these initiatives.

Some providers, including Brown, who is affiliated with Duke University, are already incorporating some of ACOG’s ideas. Still, putting the reforms into common practice may take years. One of the biggest impediments is insurance reimbursement. Currently, payment for prenatal care, delivery and a single post-birth visit is bundled together into one global fee, creating a disincentive for doctors to see patients more than once, Auguste said.

The disincentives are greater for women on Medicaid, which pays for about half of U.S. births. What’s more, in many states Medicaid coverage ends at two months postpartum. The ACOG opinion didn’t estimate the cost of implementing its recommendations.

Brown agreed that revamping how postpartum care is reimbursed is critical, and insurance representatives — along with members of other medical specialties — were on the ACOG task force that drafted the new guidelines. “I want to make sure that I get some employee health plans and some health systems to adopt this nationally,” Brown said.

Although the guidelines are aimed at ob-gyns, they would require changes throughout the maternal care system. That’s what ACOG is hoping for. “It’s really a societal call to action,” Stuebe said.

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A disability rights group in Texas sent out a survey last month, trying to figure out how many of its members became disabled by gun violence. The group, ADAPT of Texas, says it’s an effort to collect data that will help inform Texas lawmakers about how they should legislate guns.

Bob Kafka, an organizer with ADAPT, says when gun violence occurs, particularly mass shootings, the public tends to have a pretty limited discussion about what happens to the victims.

Susan Nelson was one of those victims. About 25 years ago, she was having dinner at a friend’s house. Her friend had a gun.

“It was registered and everything,” she says of her friend’s firearm.

There was also a young man there that night. He’d been thrown out of his parents’ house and was unstable. He found the gun and confronted both Nelson and her friend, saying he was going to rob and then kill them. Nelson says he first shot her in her left shoulder.

“I stood up to turn to run and was shot in the back of the head,” she says. “My friend was as well and that’s the last part I remember from the shooting. My friend died in flight to the hospital and I woke from a coma two weeks later.”

She was 29-years-old and had to start her life all over.

“I was paralyzed,” she says. “I could barely read and write. My vision was really bad so I had to spend the next seven months in therapy relearning everything and working really, really hard.”

Her hard work paid off. Nelson can walk now and she’s a writer. Her vision is good but she still lives with various disabilities.

“It takes me longer to formulate my sentences because my brain doesn’t work as fast to make the words come out of my mouth as fast as I’d like,” she says.

This experience hasn’t changed Nelson’s relationship with guns very much, though. Nelson grew up in southeast Texas surrounded by guns. She says she still thinks people who are responsible should be able to have them.

“I am not against guns. And I don’t know that everyone who gets shot is going to turn them against guns,” she says.

This way of thinking is something Kafka says he’s expecting to better understand as the ADAPT survey results come in. He wants the information to help educate lawmakers and bolster the group’s authority to testify on behalf of its members about gun legislation. Kafka says victims of gun violence all face different hurdles in recovery and he wants to know about those experiences. But he’s not expecting everyone surveyed to hold the same views.

“We have people on both sides of the issue,” he says. “There are probably NRA members in the disability community.”

Kafka says we should hear from people who were disabled by gun violence because we rarely do.

“Not only do we not talk about it, it’s invisible,” he says. “The media loves to focus on how many people died and then they have the sort of other injured, but I’ve never seen where they follow the rehab of somebody.”

Mass shootings also tend to garner a lot of media attention, says Noam Ostrander with the School of Social Work at DePaul University in Chicago. But there are many people who become disabled because of day-to-day gun violence in major cities who never get called by a reporter. For many years, Ostrander worked with gang members in the west side of Chicago who became paralyzed after being shot.

“The cost of that injury and that often then becomes a public cost is astronomical and I think that would be shocking to a lot of folks,” he says.

It’s also easy to forget, Ostrander says, that about three to five times the number of people who die from gun violence actually survive. And Kafka wants to make sure that their voices count in the debate.

This story is part of a reporting partnership with NPR, KUT andKaiser Health News. You can follow Ashley Lopez on Twitter: @AshLopezRadio.

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