Elisabeth Cassayre got a shot at her local pharmacy, and the pain in her arm began that night. It refused to go away. Days, then months passed as she couldn’t lift her right arm, couldn’t hang up clothes, couldn’t pick things up. “I remember thinking: I’ll never be able to make an apple pie for my grandchildren,” says the retired schoolteacher.

Doctors now have a name for Cassayre’s condition: shoulder injury related to vaccine administration, or SIRVA, caused by a vaccine injected too high up on the arm. The prolonged pain and stiffness of SIRVA is distinct—in other words, much worse—than typical soreness from shots.

While very rare and still little-known, SIRVA cases settled in the government’s so-called vaccine injury court have shot up in recent years. Under US law, all vaccine injury cases come before the Office of Special Masters of the US Court of Federal Claims, rather than the usual state or federal courts. Since 2011, the court has ruled to compensate 112 patients for SIRVA, with more than half those cases in the past year, according to an analysis in the Wall Street Journal.

A month ago, the government proposed an obscure rule change that has big implications for SIRVA. SIRVA would be added to the Vaccine Injury Table, a list of known vaccine complications for which getting compensation is easier and faster. The addition of SIRVA—after years of review—is confirmation that the scientific evidence is valid and the suffering of victims is real.

This change also comes at a time when the vaccine injury court is under increasing scrutiny from anti-vaxxers, who point to its existence as evidence that vaccines can cause harm. “It’s a publicity problem,” says vaccine injury lawyer Jeffrey Pop, who points out the fear that publicizing the court could scare people away from vaccines. With vaccines such a political touchstone, straight talk about legitimate injuries from vaccines is not easy to come by.

The same goes for treatment of those injuries. SIRVA patients say doctors and nurses have been initially dismissive of their pain. “They kept brushing me off,” says Barbara Steele, who got SIRVA from two vaccines, one in each arm, two years ago. She can no longer work.

Too High

Even among doctors, awareness of SIRVA is low. The first case study directly linking shoulder pain to incorrectly administered vaccines only came out in 2006. Since then, studies from other groups, including the Department of Health and Human Services, have backed up the link.

When a vaccine is injected too high on the arm, the needle intended to go into the arm muscle instead goes into the bursa, a fluid-filled sac that protects the tendons of the shoulder. Vaccines are supposed to provoke the immune system, and here, they provoke the immune system to attack the bursa, leading to pain and sometimes a frozen shoulder. With steroids and physical therapy, some patients are able to recover—but not all.

SIRVA is unusual among vaccine injuries in that the cause is not the contents of a vaccine but how the contents are injected. Any vaccine normally injected into the muscle can cause SIRVA. But properly trained nurses, medical assistants, or pharmacists can easily prevent it. “You have to feel where the needle is,” says Marko Bodor, a physician who wrote the first case study on SIRVA. “You feel it pop through the skin. The fat is like butter, and the muscle like steak.”

So why the sudden increase in cases? Lack of standardized training may be one factor. And getting vaccinations has gotten much easier in the past decade, with many shots available at pharmacies. “At a pharmacy, you don’t take your clothes off, you just pull your shirt down a little,” says Bodor. “That’s only going to expose the top part of your shoulder.”

Little data, however, is available to confirm what role pharmacies play in the rise in SIRVA cases. In any case, the problem is certainly not exclusive to drop-in vaccinations. Cassayre got her shot at a Lucky pharmacy, but Steele got hers at a doctor’s office at Scripps Health, a top medical center in San Diego.

SIRVA in Court

Growing awareness is also fuelling the rise in SIRVA cases. After the court began compensating for SIRVA cases a few years ago, Pop redesigned his law firm’s website to list shoulder injuries. “We’re still talking about a very, very small number of people in total,” says Pop. “But the more it’s out there on the Internet, the more they can find it.”

When SIRVA gets added to the Vaccine Injury Table, Pop estimates that it will shave 12 to 18 months off the compensation process for patients whose symptoms fit the exact criteria on the table. A typical case now can take anywhere from one and a half to four years, says Pop. Patients can also bring cases for injuries not on the table—this actually accounts for 95 percent of the court’s activity. For example, the court set up the Omnibus Autism Proceeding in 2009, ultimately dismissing any link between autism and childhood vaccines. No scientific evidence for such a link exists.

In fact, activists who are anti-vax—or pro-vaccine choice, as they prefer to be called—have raised the profile of the court and the National Vaccine Injury Compensation Program that funds payouts. The court and the program were both established by a 1988 law, which protects vaccine makers from liability. That ensures lawsuits don’t scare pharma companies away from the vaccine business, given the importance of vaccines to public health. Since then, vaccine makers have paid a small fee with each vaccine, which goes to fund the court’s operations and the compensations. “Pharmaceuticals are thrilled with this law,” says Pop.

Wayne Rohde, who believes his son’s autism may be linked to vaccine, now tracks every case in the vaccine court. Rohde is especially critical of the court’s lack of outreach to the wider community. “People might be more confident in vaccine policy in the US knowing that if indeed something did happen, there’s something to help them that’s funded by a tax on vaccines,” says Rohde. “I truly believe that would settle the unrest.” After a 2014 Government Accountability Office investigation, the Department of Health and Human Services did vow to better publicize the court.

But it’s also complicated: Publicize the vaccine injuries too much and these very small risks can become overblown in the public imagination. Publicize them too little and it becomes fodder for anti-vaxxers who trot them out like a dirty little secret. SIRVA enters into conversation at a time when vaccine injuries are highly politicized.

For Cassayre, she’s not interested in involving lawyers. Her shoulder injury from nearly ten years ago is better now, and she still gets her flu shots. She just wants people to know that these shoulder injuries are real, and people should be more careful.