NEW YORK — Clutching a railing for balance, 89-year-old Alan Epstein searched the hospital waiting rooms for families in distress. He paused when he came across a young woman standing alone in the hallway, making a phone call about her grandfather’s faltering health.
“Are you aware of the caregiver support center?” Epstein asked when she got off the phone. Just around the corner from the sterile waiting room, he told her, there’s a refuge with hot coffee, soft chairs and pleasant company.
Epstein, an energetic former financial broker who still plays tennis twice a week, knows the hallways well: His wife was a patient at the hospital, Montefiore Medical Center in New York City, before she died. Now he’s one of 30 volunteers who make their rounds there, recruiting stressed-out families to visit a small suite set aside for their comfort and emotional support.
Montefiore’s caregiver support center, staffed by a social worker and an administrative aide, is one of 11 that have popped up over the last decade in New York, New Jersey, Pennsylvania, Connecticut, Michigan and Iowa, based on a model created in 2006 at Northern Westchester Hospital in New York.
Hospitals are showing a greater interest in family caregivers in part because of new penalties for hospital readmissions, said Jill Gottlieb of Northern Westchester Hospital, who helps other hospitals set up their own support centers. Gottlieb said when family caregivers get the support they need, they are better poised to help patients successfully transition home.This KHN story also ran in USA Today. It can be republished for free (details).
“The family caregiver often is thrust into this world unexpectedly,” she said. “They’re ill-prepared.”
Inside hospitals — where they spend long hours awaiting surgeries or last-ditch efforts to save loved ones — family caregivers feel invisible and are “most often ignored,” said Susan Reinhard, director of AARP’s Public Policy Institute, which has been leading a state legislative campaign to require hospitals to incorporate caregivers into a patient’s care plan.
Randi Kaplan, the social worker who runs the support center at Montefiore’s Henry and Lucy Moses campus, a 1,500-bed hospital in the Bronx, a borough of New York City, knows that “invisible” feeling. She spent hours there during her husband’s six-and-a-half-hour surgery for a brain tumor.
“We were in a very sterile environment,” Kaplan recalled. “Nobody talked to us.”
Kaplan returned to the hospital in 2005, during a “cascading course of unstoppable events” at the end of her husband’s life. Rushed to the critical care unit after his cancer spread to his liver, he died at age 50.
“I was falling apart,” she said. Kaplan said she needed emotional support, but again, “nobody approached us — not a social worker, not a chaplain.”
That experience inspired Kaplan to help Montefiore create the support center in 2011, complete with a soothing waterfall, pictures of cherry blossoms, and private rooms with reclining chairs. Last month, she won an award from the Schwartz Center for Compassionate Healthcare for her work at the center, which has seen an estimated 10,000 families so far.
On a recent morning, she burst in the door with a bag of groceries — oranges, coffee, dark chocolate, red velvet cake and tissues — to offer to patients and staff.
Tissues are essential, she said: Families visiting loved ones in the hospital are “always emotionally fatigued, always anxious, always feeling alone and overwhelmed. Once they sit down, the tears start flowing and the tissues come out.”
About half of the people who come in the door are dealing with end-of-life situations, she said.
The scene inside the center can be tense: Earlier this year, Kaplan said, a woman came to the center in hysterics, gasping for air. The woman’s husband, who was in his 30s, had been rushed to the hospital in cardiac arrest.
Kaplan said she held the woman’s head to stop her from banging it against the concrete. The woman’s family urged staff to medicate her. Instead Kaplan called in a palliative care doctor, Say Salomon, who calmed her and assured her her reaction was normal. Kaplan later held the woman’s hand while a surgeon told her her husband had died.
Salomon, who stopped into the center recently, said he often brings families there for difficult conversations. In one recent case, he said, he helped a family call the patient’s son in jail. The son, who had just learned his father was dying, had to decide whether to use his travel privileges to visit his father in the hospital, or to attend the funeral.
At other hospitals, conversations like these occur in sterile conference rooms, or at the patient’s bedside, Salomon said — “There’s no dedicated space for something like that.”
There’s no dedicated space for hospital weddings, either, but that didn’t stop Kaplan from hosting one. She grew so close to a cancer patient and her partner of 14 years that they insisted on getting married inside the caregiver support center, with Kaplan as maid of honor. Kaplan decorated with flowers and walked the bride down the “aisle.” As she does with many families, Kaplan stayed in touch with the husband after he lost his wife a month ago, at age 59.
A recent visit to the center featured no grand ceremonies but small acts of compassion.
Alexa White, the 24-year-old woman whom Epstein had stopped in the hallway, arrived a few hours later with her 80-year-old grandmother and a cousin. She said her grandfather broke his hip and was suffering from internal bleeding. As they awaited updates, White, a nursing school student, caught up on homework and her grandmother napped.
Ramon Santiago III, who sells life insurance, was alone at the hospital, waiting for his father to emerge from two major surgeries — a heart and kidney transplant. He stopped in to use the center’s computers, and stayed to chat with Kaplan over coffee. He also met volunteer Elvin Olivera, a liver transplant survivor who announced himself as living proof that organ transplants work.
In addition to former patients like Olivera, volunteers include retirees from various careers — police sergeant, elementary school teacher, CT scan technician and labor union president. They went through 10 weeks of training, on top of the unofficial training of caring for their own loved ones.
The center, established through a United Hospital Fund grant, does not charge for its services. It has allowed the Montefiore to “take a more holistic view” of patients in the context of their families, instead of simply focusing on the day’s surgery, said Dr. Peter Semczuk, the hospital’s executive director.
Some of the family caregivers the center has helped also work inside the hospital. Laura Tocci, the hospital’s director of audiology, said she came to see Kaplan after her wife was diagnosed with pancreatic cancer a year and a half ago.
“I walked through the door and I just started crying,” she said. Tocci kept coming back every day for a year.
Tocci said talking to Kaplan helps her find the strength to “walk back out and do what has to get done” — caring not only for her patients, but her wife and 15-year-old son.
“It’s a hard job,” she said. “This makes it easier.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
On NPR’s Morning Edition, Kaiser Health News correspondent Julie Appleby discusses some lesser known parts of the health law that could be repealed by the GOP Congress and Donald Trump.
The bill considered the most likely prototype for partial repeal of the Affordable Care Act would result in as many as 32 million more people without health insurance and would double premiums in the individual insurance market, budget scorekeepers said Tuesday.
The estimate by the Congressional Budget Office and the Joint Committee on Taxation was on the impact of the bill passed by the Republican Congress in 2015 and vetoed by President Barack Obama last January. The analysis was conducted at the request of Senate Democrats.
“The number of people who are uninsured would increase by 18 million in the first new plan year following enactment of the bill,” said the report. That increase could reach 32 million in 2026.
At the same time, CBO and JCT estimate, premiums for those who purchased coverage in the individual insurance market would increase by 20 to 25 percent in the first year, “and premiums would about double by 2026.”Use Our Content This KHN story can be republished for free (details).
Republicans called last year’s bill a “dress rehearsal” for what they might try this year, because it was a “budget reconciliation” bill that needs only 51 votes to pass in the Senate and cannot be filibustered. Last week the House and Senate passed a budget resolution instructing specific committees to begin work on dismantling the health law, using the same budget reconciliation process.
Only items that directly impact the federal budget can be included in such a bill, however. That meant last year’s legislation would have repealed most of the ACA taxes that help fund the health law’s programs, the penalty for individuals who don’t have coverage and the tax subsidies for people to purchase coverage, as well as the funding to expand the Medicaid program. But it could not change the health law’s regulation of the insurance market, including the provision requiring insurers to sell to people with pre-existing health conditions.
The result, said CBO, would have been fewer healthy people purchasing coverage, which would leave the insurance pool with higher percentage of sick enrollees and drive premiums up. Insurers, according to the report, would likely stop offering coverage in the individual insurance market.
“CBO and JCT estimate that about half of the nation’s population lives in areas that would have no insurer participating in the nongroup market in the first year after the repeal of the marketplace subsidies took effect,” said the report. And that would rise to “about three-quarters of the population by 2026.”
Democrats were quick to pounce on the estimate as evidence that Republicans are on a dangerous path.
“Repeal and delayed replacement is repeal,” outgoing Health and Human Services Secretary Sylvia Burwell told reporters at a briefing. “CBO has just stated with analytics and real numbers what happens during that interim period” when part of the law is taken away and part remains.
“Today’s CBO report is a clear repudiation of the Republicans’ misguided plan to repeal the Affordable Care Act,” said Rep. Richard Neal, D-Mass., the ranking Democrat on the House Ways and Means Committee.
Republicans cautioned, however, that last year’s bill might not be a good reflection of what will happen in the coming weeks and months.
“The CBO can’t score the replacement because it hasn’t been drafted,” wrote GOP health policy analyst Avik Roy in Forbes. “But its estimates of the impact of (last year’s bill) are largely meaningless without consideration of what the GOP’s replacement will look like.”
Repealing much of the Affordable Care Act (ACA) would cause 32 million people to lose coverage by 2026 and roughly double premiums in the individual insurance market, the Congressional Budget Office (CBO) estimated today.
The evidence shows that the individual market is becoming more stable, not less. In contrast, repeal would set up the perfect conditions for a death spiral.
This investigation examines the booming orphan drug business and how drugmakers have rushed into the marketplace with hundreds of drugs for rare diseases, helping patients while landing lucrative federal incentives and monopoly control for every drug that gets approved.In This Series:
- The Orphan ‘Monopoly’ Game
- Coming Next: Saving Lives … But At What Price?
- Lookup Tool: Orphan Drugs Database
- Video: Interview With Henry Waxman
- Timeline: The Orphan Drug Act
Before Luke Whitbeck began taking a $300,000-a-year drug, the 2-year-old’s health was inexplicably failing.
A pale boy with enormous eyes, Luke frequently ran high fevers, tired easily and was skinny all over, except his belly stuck out like a bowling ball.
“What does your medicine do for you?” Luke’s mother, Meg, asked after his weekly drug treatment recently.
“Be so strong!” Luke said, wrapping his chubby fist around an afternoon cheese stick.
Luke now spends days playing with his big brother, thanks to what he calls his “superhero” medicine, a drug called Cerezyme, which has saved his life.
For the Whitbecks, finding a way to pay for the drug has been a nerve-wracking struggle. Their family business and its insurer cough up hundreds of thousands of dollars per year, spreading the cost across the people it insures.
Cerezyme is an “orphan drug” which means it was created to treat a rare disease, one that affects fewer than 200,000 people in the U.S. The orphan drug program overseen by the Food and Drug Administration is loaded with government incentives and has helped hundreds of thousands of patients like Luke feel better or even stay alive.This KHN story also ran on NPR. It can be republished for free (details).
But the 34-year-old program has opened the door to almost unlimited price tags and created incentives among drugmakers to cash in, and to cash in repeatedly, a Kaiser Health News investigation shows. The explosion has burdened insurers as well as government programs like Medicare and Medicaid with drugs that cost up to $840,000 a year that they have almost no choice but to pay for.
The Orphan Drug Act has clearly spurred the creation of rare disease drugs. And more are needed: The National Institutes of Health estimates that one of every 10 Americans suffers from a rare disease. All told, there are about 7,000 of them.
But the costs are adding up quickly.
Annual sales from orphan drugs are expected to grow 12 percent a year through 2020 — a pace that general drugmakers could “only dream about,” market watcher EvaluatePharma said in its most recent orphan drug report. In 2014, the average annual price tag for orphan drugs was $111,820 versus $23,331 for mainstream drugs.
What’s more, the number of orphan drugs is growing and their total portion of prescription drug spending is growing, according to EvaluatePharma. Orphan drug sales worldwide are expected to account for just over 20 percent of all drug sales, excluding generics, by 2020. Europe and Japan have strong orphan drug programs as well.
At Aetna, orphan drugs are now the fastest-growing part of the giant insurer’s spending on drugs and are driving up insurance premiums, said Dr. Ed Pezalla, Aetna’s former national medical director for pharmacy policy and strategy.
For many drugmakers, orphan drugs look so profitable that they’re drawing attention from mass-market drugs.Interactive Database Search By Brand Name, Disease
“Companies [are going] after the rare diseases … and a larger set of patients with other diseases [are] left behind,” said Alan Carr, a research analyst for Needham & Co.
High prices are a reflection of the high cost of developing new drugs, said Anne Pritchett, vice president for policy and research at the industry lobbying firm Pharmaceutical Research and Manufacturers of America.
“You may have a company that focuses on a rare disease area for 20, 30, years and never turns a profit [but] they keep at it,” Pritchett said.
Others dispute that calculation. In a December report to Congress, the Department of Health and Human Services said orphan drugs cost about $1 billion to develop compared with $2.6 billion for mass market drugs.
Bernard Munos, a former Eli Lilly executive now at the nonprofit Milken Institute, said orphan drugs cost $50 million to $200 million to develop at a small company. And regardless of the development costs, he said drugmakers will charge whatever they want “because they can get away with it.”
The creators of the orphan drug program, say the price spiral — and loopholes in the approval process — have undermined the spirit of a well-intentioned law.
“What was intended for a good purpose can be used for a purpose that’s harmful to patients who can’t afford drugs,” said former U.S. Rep. Henry Waxman, D-Calif., a primary sponsor of the 1983 Orphan Drug Act. “And it makes the whole cost of all of these pharmaceuticals much more expensive for everybody.”
‘That’s Not Normal’
One winter day in early 2016, Meg Whitbeck stood in her Connecticut home holding a baby onesie.
Meg’s days were filled with Luke spiking high fevers, rushing to the doctor’s office and watching her toddler struggle to keep food down. Just before slipping the onesie over Luke’s head, she paused.
It was a 12-month onesie; Luke was 18 months old.
“That’s not normal. Babies fly through clothes the first year-and-a-half of life,” Whitbeck said. As Meg lifted another onesie from Luke’s dresser, she took a deep breath as she realized: It was full of 9- and 12-month clothes.
Within weeks, Luke would be laying in a hospital bed at Maria Fareri Children’s Hospital in Valhalla, N.Y., If handed a toy, he would hold it but lacked enough energy to play. Luke was diagnosed with Gaucher disease — a genetic condition that affects only about 6,000 people in the U.S.
Luke’s body lacked the glucocerebrosidase enzyme, and every cell in his tiny frame was becoming compromised. Luke’s liver and spleen were swollen and without treatment his bones would eventually become fragile. Brain damage could follow. Some babies die before the age of two, if they aren’t treated. Patients can live decades with enzyme replacement therapy.
Dr. David Kronn, who heads the medical genetics unit at Maria Fareri, said Luke’s condition was “quite severe” and he needed help fast.
Luke immediately began treatment but the family said they spent months uncertain whether their health insurer Oxford Health Plans, which is owned by UnitedHealthcare, would cover the drug. The drug is made by Sanofi Genzyme and costs $6,356.69 for each treatment, the Whitbecks’ paperwork shows.
“At the time, there was a lot going on physically with Luke,” Meg Whitbeck recalled. In the first two months after his diagnosis, the family would receive bills and “we were just putting it all in a pile.”
In late April, the Whitbecks received a letter from the insurer asking for additional medical information to process the payments for Luke’s medicine. It was the first time, Meg said that she became scared about how the drug would be paid for. She recalled wondering: “How can something that’s going to keep my baby alive not be covered by insurance?”Click to view slideshow.
UnitedHealthcare spokeswoman Tracey Lempner said her company covered Cerezyme and the dosage suggested by the doctor from the beginning. Last May, the Whitbecks received a confirmation letter that UnitedHealthcare would cover the drug.
Even then, though, the Whitbecks said they were required to get the coverage reauthorized at random intervals, ranging from three weeks to 10 weeks. And in late October 2016, fear struck the family when a letter arrived saying Luke’s medicine was reauthorized for just one week.
In an emailed statement, UnitedHealthcare said it granted a request in early November from Luke’s doctor to approve payment for a full year. The insurer declined multiple requests for interviews with executives. But Lempner stated in an email that “specialty medications like these are among the greatest drivers of pharmacy benefit costs for all employers, individuals, insurers and the government.”
At the request of Kaiser Health News, Express Scripts, which manages pharmacy benefits, analyzed the orphan drugs on its approved list, or formulary. Four orphans cost more than $70,000 for a 30-day supply, or $840,000 annually. Another 29 orphan drugs cost at least $28,000 for a 30-day supply, or more than $336,000 a year. At those prices, the revenue for an orphan drugmaker can build up quickly: A $50,000 orphan taken by 50,000 patients could reach $2.5 billion in annual sales; a $300,000 orphan for just 5,000 people could hit $1.5 billion a year.
Just after Christmas, Biogen Inc. announced it would market Spinraza, its newly approved treatment for spinal muscular atrophy, for up to $750,000 in the first year and $375,000 in later years. Leerink analyst Geoffrey Porges wrote in a note that the price could be “the straw that breaks the camel’s back in terms of the U.S. market’s tolerance for rare disease pricing.”
Executives at Express Scripts, the pharmacy which supplies Luke’s medicine, said orphan drugs like Cerezyme often have very few competing drugs that could help them drive down the cost.
“We have very little negotiating power because the pharmaceutical company can set the price and we have to be a price acceptor,” said Dr. Steve Miller, chief medical officer for Express Scripts.
In the past year, the Whitbecks said they have paid more than $17,000 out of pocket for Luke’s medical care. Most of the cost falls on Oxford, the insurer that covers the 25 employees and their families where Drew works. The small, family-owned company said the medical coverage for its employees amounts to about $338,000 a year and employees don’t pay monthly premiums.
The ultimate cost to the family is unclear but they fear the drug treatments, plus related care, could reach into hundreds of thousands per year if the reauthorizations ever stop.
Meg has gone back to work part time as a dietician and the family launched a fund-raising effort called “The Warrior Campaign” on social media, which shows the family has raised nearly $12,000 thus far. They also applied for $15,000 in aid from the Sanofi Genzyme’s patient assistance program. So far, the family said the company has paid for a month of Cerezyme and provided guidance from a case manager.
While she appreciates the support, Meg Whitbeck is daunted by the uncertainty of what the family has to come up with.
“We’re not going to not treat Luke, but we’re also never going to be able to pay these bills,” she said. “It was almost laughable.”
Much of the drug’s early development costs were paid for by the National Institutes of Health, according to a 1992 report from the congressional Office of Technology Assessment. The report notes that Genzyme spent about $29.4 million on R&D for the early version of the drug, Ceredase. The company quickly recovered those costs. Ceredase launched with a nearly $300,000 price tag in 1991 as one of the most expensive drugs in the world. Cerezyme, a genetically engineered successor, came to market in 1994. French pharmaceutical giant Sanofi-Aventis acquired Genzyme for $20.1 billion in 2011.
Sanofi Genzyme declined multiple requests for interviews. In an email, company spokeswoman Lisa Clemence said the company has raised the price of Cerezyme slightly since it launched and — relative to inflation, it’s 33 percent less expensive today than 22 years ago. Asked how drug prices are set, Clemence emailed that it is “determined by the clinical value they provide to patients and the rarity of the disease they treat.”
Cerezyme is still the drugmaker’s top-selling rare disease medicine, with nearly $800 million in 2015 annual sales, according to the French company’s annual financial filing. Despite competition, prices to treat Gaucher disease have not come down; indeed, the newest drugs on the market are priced at about $300,000 as well.
Drew Whitbeck joked that, in the end, it all feels like Monopoly money to him. Meg would like the company to justify Cerezyme’s price.
“I totally get from a scientific point of view, what it takes to create, manufacture and deliver these medications,” she said. “But why can’t they make it a little less expensive? What’s holding them back?”
“Specialty drugs,” which include orphan drugs, have seen “incredible price increases the past few years, across the board,” said Craig Burns, vice president for research at America’s Health Insurance Plans, which represents health insurers.
AHIP, in a study led by Burns, found that the prices of 45 orphan drugs increased 30 percent, on average, from 2012 through 2014.
Former U.S. Rep. James Greenwood, R-Pa., now president of the Biotechnology Innovation Organization, a trade group, said insurers are overstating the impact.
“The insurance industry likes to tell us that the reason our premiums [and] our copays and coinsurance are going up and our deductibles are going up” is because of high prices for orphans or other drugs, Greenwood said. “It just isn’t the case.” The bulk of health care spending, Greenwood said, is for hospitals, doctors and nursing homes. Prescription drugs get attention, he said, because “we are an easier target.”
Insurers, including UnitedHealthcare, try to mitigate the costs of orphans and other high-cost drugs by requiring patients to pay a larger share, setting quantity limits and asking patients to try other less expensive drugs first, a process known as step therapy.
Some believe that amounts to rationing.
“Nobody wants to talk about rationing, but there is already some of that anyway because of [the] levels of insurance that we have,” said Christopher-Paul Milne, director of research at Tufts Center for the Study of Drug Development.
‘What Would God Really Think About This?’
In the early 1980s, Abbey Meyers was known on Capitol Hill as the housewife from Connecticut — an angry mother who wouldn’t put up with pharmaceutical companies ignoring her son’s illness, Tourette syndrome.
A drugmaker had stopped producing medicine for the disorder, saying there weren’t enough patients to justify the cost. Meyers mobilized advocates, lawmakers and even actor Jack Klugman from the popular TV show “Quincy, M.E.” to persuade Congress to pass the Orphan Drug Act.
Under the law, companies with orphan drugs win some of the richest financial incentives in the regulatory world: a 50 percent tax credit on research and development in the U.S., fee waivers and access to federal grants. In a 2009 webinar, an FDA official referred to the incentive package as “our ‘basket of goodies.'”
Most important, once an orphan drug gains FDA approval, the agency guarantees it will not approve another version to treat that specific disease for seven years, even if the brand name company’s patent has run out.
Now, three decades since the program started, Meyers is worried that corporate greed is ruining her legacy.
“They will set a price of $300,000 a year for their drug for a fatal disease. And they’ll go to church every Sunday, and they will pray, and they’ll ask for God’s grace, you know?” Meyers said during an interview at her Connecticut home. “I’m wondering, what does God really think about this?”
Just before Christmas, the Whitbecks coped with another health scare.
There was a blockage in Luke’s chest port, an implanted catheter through which Cerezyme is delivered into his body each week. He needed surgery to fix it. Luke came down with pneumonia afterward but has recovered.
“I hope in 2017 there are no hospital admissions,” Meg Whitbeck said. Then she paused and recalled that the family hadn’t yet seen all the bills from the port surgery.
The family’s savings disappeared in 2016. And the Whitbecks are still trying to figure out if they have to pay an outstanding $6,000 bill for Cerezyme that appeared on the latest pharmacy statement.
“We’re not scared,” Whitbeck said, but “when you’re a parent of a child with a chronic illness, you’re always walking on a tight rope … Every day we have to give [Luke] the once-over and make sure everything is good. If it’s a good day, everything is like a normal family.”
Contributors: John Hillkirk, Scott Hensley, NPR, Diane Webber (editors); Elizabeth Lucas (data editing); Joe Neel, NPR (radio editing)
Interactives, Video and Presentation: Lydia Zuraw, Emily Kopp and Meredith Rizzo, NPR (timeline, digital presentation); Francis Ying (videos, motion graphic); Heidi de Marco (videos, photos); Alley Interactive (database lookup)
KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.
Medicaid expansion has generated dramatic gains in health coverage among low-income Ohioans, and enrollees report that coverage has improved their health, financial well-being, and job prospects, says a new report from Ohio’s Medicaid agency.
The following is a guest post by Clare Feikert-Ahalt, foreign law specialist for the United Kingdom at the Law Library of Congress.
This is a post for all the Star Wars fans and aspiring Jedi out there! The Charity Commission, an independent body established under the Charities Act 2011 that is responsible for regulating and registering charities in England and Wales, recently issued a decision that rejected an application by the Temple of the Jedi Order to establish a new charitable incorporated organization to advance the religion of Jediism in England and Wales.
The Temple of the Jedi Order submitted an application under the provisions in the Charities Act to become registered as an incorporated charitable organization. It is already a registered 501(3)(c) charity in the United States. The Temple defines Jediism as
[A] religion based on the observance of the Force, the ubiquitous and metaphysical power that a Jedi (a follower of Jediism) believes to be the underlying, fundamental nature of the universe … [including] the beliefs of Jedi; 3 Tenets; the Jedi Creed; the Jedi Code; the powers, teaching and who can get involved.”
In order to become a registered charitable incorporated organization in England and Wales, the body must have a constitution, principal office in England or Wales, consist of one or more members and be for the advancement of one of the charitable purposes provided for under section 3 of the Charities Act 2011. These purposes include the advancement of religion, poverty, education, health, arts, sports, human rights, environmental protection, or animal welfare. Religion is defined further in section 3(1) of the Charities Act as “(i) a religion which involves belief in more than one god, and (ii) a religion which does not involve a belief in a god.” The charitable purpose must also be for the benefit of the public, and this benefit must be identifiable.
The application submitted by the Temple of the Jedi Order noted that the aim of establishing a charitable incorporated organization in England and Wales was:
To advance the religion of Jediism, for the public benefit worldwide, in accordance with the Jedi Doctrine … [and ] To advance such charitable purposes (according to the law of England and Wales) as the Trustees see fit from time to time.
The Charities Commission may reject an application under section 208 of the Charities Act if it is satisfied that the applicant would not be considered a charity under the provisions of the Act at the time it would be registered or if the proposed constitution of the applicant does not comply with the requirements of section 206 of the Charities Act. Applications may also be rejected if the name of the applicant charity is too similar to the name of an existing charity. In this case, the Charity Commission recognized that Jediism draws upon other recognized religions and philosophical doctrines, but it was not satisfied that the Temple of the Jedi Order was a charity for the purposes of the Charities Act. In making its decision, the Charity Commission noted that the decisions that it makes on what is a religion within the bounds of charity law “can be difficult and complex” and that it must look to see if the religion consists of a belief in a god or spiritual or nonsecular principles or things. There must be a relationship between the followers of the religion and the gods, or nonsecular principles or things, that is expressed through:
worship, reverence and adoration, veneration intercession or by some other religious rite or service. In addition, that it must be capable of providing moral and ethical value or edification to the public and characterised by a certain level of cogency, seriousness, cohesion and importance.
When reviewing Jediism, the Charity Commission was not satisfied that it met any of the characteristics for a religion under the charity laws of England and Wales. It was concerned that Jediism consisted mostly of an online community, with online services and sermons and appeared that it could be adopted more as a lifestyle choice than a religion. It ultimately decided that it was not satisfied that the Temple of the Order of Jedi was:
… established for exclusively charitable purposes for the advancement of religion and/or the promotion of moral and ethical improvement for the benefit of the public. … [or] that the observance of the Force within Jediism is characterised by a belief in one or more gods or spiritual or non-secular principles or things which is an essential requirement fora religion in charity law. Despite being open to spiritual awareness, there is scope for Jediism and the Jedi Doctrine to be advanced and followed as a secular belief system. Jediism therefore lacks the necessary spiritual or non-secular element.
Jediism is not the first religion in recent times that has been refused charitable status in England. In 1999 the Charity Commission held that Scientology was not a religion for the purposes of English charity law as the “core practices of Scientology … do not constitute worship as they do not display the essential characteristic of reverence or veneration for a supreme being.” More recently, however, the Supreme Court of the United Kingdom ruled that the church in which Scientology is practiced is a “place of meeting for religious worship” with the result that weddings may now be performed in these venues. This decision could have an impact on future decisions by the Charity Commission when it considers what a religion is for the purposes of the Charities Act.