Feature

Hepatitis C Patients Are Being Forced Into Underground Buyers’ Clubs

Lisa Kaye Gray has been tired since she was 26 years old. Now 52, and a grandmother with rust-red hair and a lilting Louisiana accent, she is finally gaining the energy to help her grandson chase squirrels through the backyard. But her voice still breaks as she recalls decades marked by fatigue and muscle aches; early symptoms of hepatitis C.

“I missed out on so much,” she mourns. “Just being tired, not able to enjoy life.”

Gray acquired hepatitis C in 1991, and spent more than twenty years living with the virus’s effects. Though she didn’t begin to experience symptoms of major liver damage until 2015, she says she spent most of her life feeling fatigued, sometimes to the point of being bedridden, and nauseated.

Interferon treatment, the first available treatment for chronic hepatitis C, was introduced in 1996, but the cure rate was low; around 30 percent for genotype 1, the most common form of the virus in North America. It was also difficult to administer, requiring self-injection into the stomach, and came with a host of side-effects, ranging from nausea and muscle aches to long-term autoimmune dysfunction. The full treatment course lasted six months to a year. Gray tried interferon treatment for a month, but discontinued it when she learned she was pregnant.

“I’m glad I did,” says Gray. “I’ve heard horror stories about people who took it for the year.”

Gray is not the only hepatitis C patient who chose decades living with the virus over attempting interferon. David Cowley of Wales lived with hepatitis C for 35 years, refusing interferon because of its side effects and low success rate. But Gray and Cowley share something else in common: neither has hepatitis C anymore.

One day in 2015, Gray’s boss noticed that she looked, she recalls, “as yellow as the walls.” Because jaundice (yellowing of the skin and eyes) in patients with hepatitis C is a sign of serious illness, she immediately went to her doctor and learned that she had liver cirrhosis. She applied for disability benefits, and while waiting for a determination, began undergoing the testing procedures that would allow her to take a new kind of medicine, one with a much higher success rate and far fewer side effects.

Gilead initially set the price for full treatment between $74,000 and $94,000

Sofosbuvir is a direct acting antiviral (DAA) medication sold by American biopharmaceutical powerhouse Gilead Sciences under the brand names Harvoni, Sovaldi, and Epclusa (Harvoni and Epclusa also contain other drugs, making them single-pill regimens, while Sovaldi requires a second drug to be prescribed with it). These drugs have a 90 percent or higher cure rate across a variety of genotypes (for genotype 1, the cure rate closes on 100 percent), and Harvoni in particular boasts only mild, short-term side effects like fatigue. All three medications are consumed orally and take 12 weeks to complete. In comparison to the old treatments, these DAAs function like a miracle. Gilead initially set the price for full treatment between $74,000 and $94,000 for patients in the United States.

Medicaid covers the treatment — but there’s a catch. There are 3.5 million people in the United States living with hepatitis C, and state Medicaid programs find it difficult to afford to treat patients at the prices Gilead set. (Rough math says curing all current cases would cost Medicaid half of its annual budget). Most state Medicaid programs initially dealt with the shortfall by limiting treatment to people who meet their criteria. In 25 states that criteria includes abstinence from illegal substances, even though most new hepatitis C infections in the United States are the result of injection drug use.

In 32 states, patients must also have liver damage. Newly-infected patients, or those whose disease hasn’t progressed far enough, must wait until they suffer potentially irreversible liver damage before they receive coverage for their treatment. In addition to more time living with the symptoms, this also increases the risk of complications like liver cancer and decreases the effectiveness of treatment. In one study of economically disadvantaged patients, only 82 percent of patients with decompensated cirrhosis (a severe form of liver damage) achieved viral elimination.

Medication access is not only an issue for chronic hepatitis patients in the United States. Other countries have been battling high drug costs as well, including Australia and the United Kingdom. David Cowley was fortunate — and tenacious — enough to get into a 2013 drug trial for Harvoni in the UK. When he learned about the trial, which required a weekly trip to an office that was 200 miles from his home, he called and “pestered them for weeks” until he got in. Within months of beginning treatment, he was cleared of the virus that had been slowly killing him for 35 years. Then the drug that saved his life hit the market, and he learned the price tag.

“I was disgusted by the prices,” he says. So he decided to travel to Bangladesh to get hold of generic versions of the medication for distribution to other patients in need. Cowley was not the only person with that idea.

James Freeman, a doctor who runs a telehealth program in Australia, and Greg Jeffreys, a historian and author also based out of Australia, run what each hesitantly call “buyers’ clubs” for hepatitis C medications. Cowley, Freeman, and Jeffreys all know each other, though they operate separately. The clubs function under the same essential premise: That hepatitis C medication should be available at free or low cost to everyone who needs it. They help patients acquire the generic drugs, offering full 12-course treatments for around $500-$1000, and sometimes less based on need and availability.

“It’s pretty simple,” says Jeffreys of his service. “Someone contacts me, I ask for some kind of medical report to show they actually have hep C, I explain what it costs, they send me a copy of their report, their shipping address, their contact phone number, a payment method — whatever that might be — and two weeks later they have their medicine.”

These buyers’ clubs operate by taking advantage of personal importation laws, which vary by country. For the U.S. that means buyers must import less than a three-month supply, and they cannot sell or distribute the medication. An added provision that a medication must be unavailable domestically leaves the legality of these practices in somewhat of a gray area .

Rochelle C. Dreyfuss, co-director of the Engelberg Center on Innovation Law & Policy at New York University, says that under patent law, buying and importing a cheaper version of the same product from another country is legal, but the addition of U.S. Food and Drug Administration (FDA) regulations make pharmaceuticals especially tricky. “I think [this] confusion is everyone’s confusion,” she notes, adding that if the FDA were to crack down, “one side will say it’s available domestically, you just have to pay more money, and the other that these patients can’t afford to buy it here.”

Although the FDA is not currently intervening in these buyers clubs, some doctors are wary and advise against importing generic drugs. After all, how can a buyer know what’s truly in them; whether they are effective or potentially dangerous?

This is a sentiment Lisa Gray understands. Jaundiced and living with disabling liver cirrhosis, Gray was eagerly awaiting her medication approval — now that she was finally sick enough to meet the criteria. But when she began receiving $1,500 monthly in disability checks after her liver damage left her unable to work, she lost the Medicaid coverage that would have paid for her treatment. (Louisiana expanded Medicaid the following year, but 17 states still have not done so). Uninsured, and unable to pay the premium and co-pay for private insurance, she began looking into alternative options.

“At first I was very skeptical,” she says of the buyers clubs. “It even went through my mind that they’ve got all these people paid to praise generics…but I found Greg Jeffreys, I talked to him, and I realized it’s not a scam.”

Gray says Jeffreys worked with her financial situation by getting his medication connection, which is based out of India, to send her a recently expired 8-week course of sofosbusvir free of cost. That left her responsible only for the other drug she needed to take with it, daclatasvir. She paid $350 for it, by credit card. When she was unable to come up with the funds for her remaining treatment, Jeffreys sent it to her free of charge.

“It was scary because you don’t know if it’s a real medication or not, but I thought what do I have to lose? I was throwing up everyday, it was horrible,” recalls Gray. “I started taking that medicine; my eyes were yellow, they got white. It was amazing.”

Gray also remembers her doctor insisting that she wait until she could find funding for the prescribed treatment course, rather than using a personal import scheme to buy generics. “My doctor literally screamed at me. [She said] ‘they’re not regulated, they could be fake.’”

But Jeffreys, Freeman, and Cowley, who now all use a shared seller out of India, insist that fear is unnecessary — at least when it comes to their medicines. Freeman reports that he has seen a 94 percent cure rate with his own patients. With the benefit of his medical background and connections with the Tasmanian government, Freeman says he’s had his drugs tested from the start, when he was importing raw materials from China, and that they are virtually identical to those found in Harvoni and other brand name medicines. Jeffreys added that the Indian connection the three use now gets the drugs directly from Mylan, who partners with Gilead Sciences to manufacture these drugs in India.

“These products are licensed by Gilead and approved by the FDA,” Jeffreys asserts. “To say they’re dangerous is crazy.”

This doesn’t mean that all buyers’ clubs are created equally. As with any unregulated enterprise, copycats have popped up on Facebook claiming to have special contracts for drugs with other countries. Although there’s no way to know for sure whether these are illegitimate, they — unlike Jeffreys, Cowley, and Freeman — did not immediately respond to inquiries for comment.

States have been slowly lifting regulations surrounding Medicaid access to direct acting antivirals for hepatitis C. As of 2017, 18 states have lifted the liver fibrosis restrictions and 22 others are granting coverage to patients with less severe liver damage; four of these require only mild fibrosis. In addition, the Department of Health and Human Services has questioned Gilead and other companies about their pricing in the hopes of being able to grant coverage for more patients. The hope is that as more drugs become available and drug costs lower, more states will lift or lessen eligibility restrictions so that patients in the United States can access these medicines through their providers.

Still, Jeffreys says he has seen no decline in Medicaid patients from the United States who need meds. “I get heaps of them,” he says about clients on Medicaid. “It’s been exactly the same for the past three years. I get probably 100 e-mails from the United States every week.”

For low-income patients like Gray, who lose or are denied coverage, these buyers clubs have become a lifeline, linking them to treatments that change their lives within months.

“It’s just an amazing feeling to know that this virus is not alive in me anymore,” says Gray, who had no detectable viral load twelve weeks after treatment. “I just get mad that my own country could not help me.”

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Feature

Inside the Effort to Organize Freelance Journalists

The New Yorker, The Chicago Tribune, The Los Angeles Times, Slate, Vice — whether at new media outlets or legacy publications, newsrooms across the country are unionizing. Most recently, 75 percent of the staff at The Virginian-Pilot and the Daily Press signed union cards with The NewsGuild.

While these victories are welcome for staffers who were previously working without the protections of union membership, their collective bargaining units and contracts usually omit the lowest, yet largest, rung of the newsroom labor ladder: freelancers. And without organizing freelancers, journalists’ unions rest atop a shaky hierarchy of labor, which is bound to be upset.

Finding data on the number of freelancers is tricky. Figures from the Bureau of Labor Statistics — which are the best available — show that there are currently about 37,995 reporters and correspondents employed as staffers by newspapers, publishers, broadcasters, and other outlets, while about 83,968 people are self-employed writers and authors, a category which includes those who write for digital news organizations and blogs. The bureau predicts that the number of employed reporters and correspondents will decrease by 10 percent through 2026, while the ranks of freelance writers and authors will grow by 8 percent during the same period. David Hill, a freelance journalist and vice president of the National Writers Union, is confident that “every single media outlet” uses freelance writers.

“I don’t think anyone has good numbers on this,” says Hill. “Some might quibble with how we decide to define ‘journalist’ here, because there is a lot of freelance writing that exists in the grey area between what was maybe once referred to as blogging and what we may think of as journalism, especially online.”

Coming together to bargain collectively is key for freelancers because of the many professional difficulties they face, beginning with low pay. According to the BLS, the median pay for writers and authors was $61,820 in 2017, but that figure masks business expenses and benefits, such as health care, which freelancers must independently purchase.

Without regular work as columnists or contributing writers, freelancers must jump from assignment to assignment, pitching story ideas, negotiating rates, completing articles, and then hoping for full and timely payment. And when publications go under or change their business models, freelancers are left without any recourse but to hunt for the next opportunity.

Describing the issues faced by members of the National Writers Union, Hill says, “Their issues are the same as every freelance journalist’s: low rates, waiting for many months to get paid with no guarantee of when or if the check will arrive, and a general feeling that rates are too low to make a full-time living anymore without supplementing your freelance income somehow.”

Typically, unions focus on organizing a “collective bargaining unit,” which is a well-defined body of workers who are not considered freelancers, contractors, or temps. This is often seen by labor organizers as a strategic necessity for classifying workers as proper employees whose right to unionize is legally protected. Under current law, independent contractors don’t have collective bargaining rights; regulators have even used antitrust law to go after groups of contractors who attempt to organize.

Additionally, unions usually operate on dues collected from their members’ paychecks by their employers, in a fashion similar to payroll taxes. Freelancers typically do not have any deductions made from their payments, making dues collection a more onerous process.

A branch of the United Automobile Workers, the National Writers Union is one of the only labor unions open to freelance journalists. Without a well-defined collective bargaining unit nor access to the traditional means of collecting dues, it has been creative in its approach to organizing. Members are free to join or leave as they please and must opt into paying dues. The union counts about 850 journalists among its dues-paying members.

The union is not able to collectively bargain for these writers, since they don’t work for any one outlet, but members are attracted to its other services and benefits, such as providing individual or group legal representation in specific disputes, lobbying lawmakers for legislation protecting freelancers, and negotiating voluntary agreements with publications. Most recently, the National Writers Union reached an agreement with the socialist magazine Jacobin, stipulating minimum rates, kill fees, payment deadlines, and more.

Labor law works against us and forces us to be creative. Whatever union freelancers end up forming will be very non-traditional.

The Freelancers Union operates in some similar ways, although it is technically a non-profit organization rather than a certified union. Executive Director Caitlin Pearce estimates that 93,750 of the organization’s members are writers or editors, including journalists. Membership is voluntary and free.

“Freelancers Union offers its members a voice on advocacy issues impacting the independent workforce, resources, education, and events helping freelancers grow their network and navigate the ups and downs of freelancing, and benefits including health, dental, life, disability, liability, and retirement,” says Pearce. The organization is funded by state and private grants, donations, and paid services — the last of which has led critics to accuse the Freelancers Union of being more interested in hawking insurance products than organizing workers.

Together with two dozen other workers’ organizations, the Freelancers Union and National Writers Union were able to lobby New York City to pass the Freelance Isn’t Free Act, which went into effect in 2017. The law includes provisions requiring written contracts for freelance work, mandating a 30-day deadline for payment, and awarding freelancers double damages in court. It is touted as providing the strongest protections for freelancers anywhere in the nation.

While the Freelance Isn’t Free Act is certainly the highest profile recent victory, there are ways beyond legislation that freelancers can exert their collective power. Earlier this month, 115 members of Study Hall, an online community of freelance journalists, announced that they would cease working with The Outline after the website suddenly fired a quarter of its staffers, providing an example of freelancers self-organizing independently from any union in the industry. Similar efforts with freelancers in other sectors, such as food couriers working for Uber, have succeeded where traditional unions have failed or feared to venture.

“The nuts and bolts of how to do this is very tricky, and nobody has figured out a perfect model yet,” says Hill of organizing freelance journalists. “Labor law works against us and forces us to be creative. Whatever union freelancers end up forming will be very non-traditional.”

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Feature

Arizona Had A Plan To Make the Wealthy Pay For Education. The Supreme Court Shut It Down.

All throughout the hot Arizona summer, you could find public school teachers decked out in red t-shirts stamped with the phrase #RedForEd. They were everywhere — tabling at community events, discussing the lack of public education funding at summer barbeques, wielding clipboards and wandering parking lots in the scorching afternoon sun in search of registered voters.

After years of funding cuts, the 2017-2018 school year culminated in a statewide teacher walk-out in protest of Arizona’s poor public school conditions and low educator pay. During the summer, supporters shifted their focus to Invest in Education, gathering 270,000 signatures in support of a ballot initiative that would increase income taxes for the wealthy and raise $690 million for public education. But in a recent decision by the Arizona Supreme Court, the Invest in Education initiative has been removed from the November ballot, effectively silencing educators and refusing Arizona residents the opportunity to vote to increase public school funding.

The Arizona Supreme Court decision is not just a blow to the thousands of supporters who spent months protesting, organizing, and petitioning. It is a rejection of a literal phenomenon. The Arizona walk-out followed similar teacher protests in Oklahoma, Kentucky, and West Virginia, a movement resembling a wildfire that caught and took hold state by state. For six days last April, more than 1,000 public schools across Arizona closed and nearly one million students stayed home. An estimated 50,000 red-shirted supporters marched in Phoenix, with a throng of 300 music teachers forming an impromptu spirit band. In the last days of the walkout, as state lawmakers argued late into the night about the education budget, educators kept watch outside the State Capitol. Some slept on the floor of the lobby.

Only after Governor Doug Ducey signed a bill on May 3 to provide a gradual 19 percent salary increase for teachers did they agree to end their protest. Still, many worried that the budget couldn’t support the $600 million annual increase. State lawmakers partially funded the raises by creating a new car registration fee and raising property taxes in low-income school districts—both of which would shift the cost burden onto low-income people. Ducey also promised that nearly half of the funding would come from overly-optimistic projections of future economic growth, as well as surplus in the Medicaid budget due to low enrollment numbers.

To make sure the teacher raises and other education needs were fully funded through a dedicated source, educators turned their attention to the ballot initiative. If passed, the Invest in Education initiative would have raised the income tax rate by 3.46 percentage points for individuals earning more than $250,000 or households earning more than $500,000. For individuals earning more than $500,000 or households that earn more than $1 million, it would have raised income tax rates by 4.46 percentage points.

“We’re going to gather as many signatures as possible to qualify for the November ballot,” Marisol Garcia of the Arizona Education Association told CBS in June. “We’re going out to the zoo, we’re going to go to grocery stores, libraries, soccer games, we’re going to ask families, all of whom supported us during this movement, to join us.”

The state’s new law requires ballot initiatives to be free of all technical errors, including using the correct font size on petitions

And they did. Organizers collected 120,000 more signatures than the state required. They did so even with the state’s new strict compliance law, which requires citizen ballot initiatives to be free of all technical errors, including using the correct font size on petitions, ensuring that voters sign their full names and don’t mark outside the designated signature box, and having identical wording in paper and online versions of petitions. Organizers across issues say such strict compliance regulations are unrealistic and inappropriately burdensome for grassroots-led efforts, effectively preventing citizens from being able to propose their own laws. Strict compliance was passed by conservative lawmakers after a citizen-led effort to increase the state minimum wage was passed overwhelmingly by voters in 2016.

In early August, an opposition group led and financed by the Arizona Chamber of Commerce argued in court that the 100-word description, which appeared at the top of the signatory page, did not reflect the full scope of the initiative. In addition to raising taxes on the wealthy, it would also “eliminate the indexing of income tax brackets to account for inflation.” The group also said the initiative description should have used the phrase “percentage point” instead of “percent” to describe the increase in tax rates. The judge ruled in favor of Invest in Education. But the opposition group appealed the decision and the case moved to the Arizona Supreme Court.

On August 29, just before the long Labor Day weekend, the Arizona Supreme Court voted to reverse the decision of the lower court and removed Invest in Education from the ballot. In the decision, Chief Justice Scott Bales wrote that the omission of the indexing explanation “creates a significant danger of confusion or unfairness.”

In response to the decision, many initiative supporters angrily decried the packing of the court by Governor Ducey. In 2016, he signed legislation to increase the number of Arizona Supreme Court Justices from five to seven, and has appointed three justices since taking office in 2015.  State Senator Martin Quezada Tweeted: “The @dougducey-stacked AZ Supreme Court just saved the 1% from the horror of having to pay their fair share for the education of our children.”

Teacher and co-chair of Invest in Ed Joshua Buckley said that voters would have supported the initiative—an opinion backed up by recent polling, which showed that 65 percent of surveyed Arizona voters supported it. “The politicians and those in power know that Invest in Ed was going to pass, that community members, that educators, that parents and faith leaders all know that we need to invest in our student’s education,” said Buckley. To Buckley’s credit, there is some real evidence that conservatives are trying to thwart ballot initiatives that they know are popular. A New York Times article from 2016 quotes a member of the Republican State Leadership Committee saying “ballot initiatives will not be the left’s mechanism for gaining power and advancing their agenda,” and asserting that conservatives need to “reject their efforts and promote our own.”

In these first weeks back to school, educators are both heartbroken and angry, but remain committed to the fight. Becky Graseck, a math teacher and #RedForEd organizer, was one of thousands of volunteers who collected signatures this summer, her infant daughter strapped to her chest in a carrier. When she heard about the decision to remove the initiative, Graseck says she was stunned, especially since it had passed so easily through the lower court.

Graseck says, “They are going to make us fight for every millimeter of ground, but the fight makes us stronger. It makes us that much more informed and knowledgeable and brings that many more people in. And it makes them angry and ready to work.”

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Analysis

DC City Council’s Plan to Overturn the New Minimum Wage Law Will Hit People of Color Hardest

On Monday, Washington, D.C. Council members will hold a public hearing on the Tipped Wage Workers Fairness Amendment Act. The new bill, proposed by Council member Phil Mendelsen, would repeal Initiative 77—the progressive minimum wage ballot initiative that D.C. voters passed overwhelmingly last June.

Overturning Initiative 77, which would gradually raise the tipped minimum wage from $3.89 per hour to the full minimum wage by 2026, would be a tough blow for tipped workers. They’re already three times more likely to live in poverty than other workers—and those odds get worse for people of color.

New analysis by the Economic Policy Institute shows that in D.C., people of color make up 70 percent of the tipped workforce. This alone ensures that communities of color are most affected by Initiative 77.  Moreover, when we analyzed wage gaps for full-time, year-round workers in tipped occupations (referred to here as “tipped workers”), we found that tipped workers of color also earn significantly less than white tipped workers in D.C.

Black servers receive tips that average 15 percent to 25 percent less than white servers

Among full-time, year-round tipped workers in the District, the median annual wages of Hispanic tipped workers were $25,760—$10,737 less than the wages of non-Hispanic white tipped workers. Non-Hispanic black tipped workers made even less at $25,345, a gap of $11,152. This discrepancy is due in part to the nature of tipping itself, which creates a power structure that permits discrimination to blossom: Academic researchers found that black servers receive tips that average 15 percent to 25 percent less than white servers. The result is a wage gap so big that it could cover nearly 6 months of child care, or more than 8 months of rent, in one of the most expensive cities in the country.

This sizable gaps in tipped workers’ wages mirrors broader economic inequalities in the District, which has one of the nation’s largest racial income gaps. New data out this week from the Census Bureau show that while median household income for white families was more than $134,000, the median black household income was just over $42,000—less than one-third as much. And although at nearly $85,000 per year, D.C.’s Hispanic families have the highest household income of Hispanics across the nation’s 50 biggest cities, it still leaves them nearly $50,000 below white families.

Given the disparities they face, it’s not surprising that communities of color came out strongly in favor of giving tipped workers a raise. Across D.C.’s eight wards, support for Initiative 77 was highly correlated with the share of residents of color. In Wards 7 and 8, where more than 90 percent of residents are black, Initiative 77 passed with more than 60 percent of the vote. The only ward where initiative 77 did not win the majority of the vote was Ward 3—the whitest, and wealthiest, ward in the district.

In other words, if D.C. Council members reverse Initiative 77, they’ll not only be disproportionately hurting D.C.’s communities of color—they’ll also be directly silencing these communities’ voices by disregarding their votes.

Methods: In our analysis, which employs the 2012-2016 American Community Survey,  we used the same “customarily tipped occupations” that the D.C. government used it its minimum wage impact study. This definition is very similar but not identical to the occupations used by the Economic Policy Institute in their analysis. Notes: In this analysis, “workforce” includes all those who are employed.

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Feature

In a Changing Climate, Access to Cooling Is a Human Right

When I wake at 5:00 a.m. on a summer desert morning, it’s to catch the only cool moments before the day begins. In a few hours, the temperature will rise past 100 degrees, and by mid-day, the dashboard thermometer in my car will read 117 degrees. I keep my children’s car seats covered with old towels and grocery bags to prevent the buckles from heating up like branding irons.

Along the roadsides, the leaves on the orange trees droop and even the cacti look thirsty. At the Santa Rita Park, dozens of people are stretched out on top of blankets in the grass, taking refuge beneath the few leaning shade trees. Every summer there are seasonal warnings on the news: Remember to stay hydrated. Never leave your pets or children in an enclosed vehicle. Seek out a cool, indoor space during the hottest part of the day.

Once, during a heat wave, I volunteered in an emergency cooling center. It was in the basement of a nearly-abandoned building, down a narrow staircase of teetering bricks. When my eyes adjusted to the dark, I could make out the presence of other human beings sitting against the cement wall or reclining on cots. Mostly people were quiet, listening to each other breathe, napping, occasionally making small-talk, filling water cups from a jug of filtered water by the door. They spent hours there until the sun went down, then they reemerged above ground. But even at night the temperature stayed at 100 degrees.

According to NASA, the year 2017 was the second hottest year in the 138 years that we’ve been able to measure global temperatures. All five of the warmest years on record have taken place since 2010. In the United States and globally, climate change and the resulting heat and drought disproportionately affects those living in poverty, as do extreme weather events such as hurricanes and wildfires.

The Center for Climate and Energy Solutions calls extreme heat “the deadliest natural disaster in the United States, killing more people on average (about 600 per year) than hurricanes, lightning, tornadoes, earthquakes, and floods combined.” In communities across the country, cooling initiatives are becoming increasingly critical to preventing heat-related illnesses and death, especially among low-income or homeless populations.

 *           *           *

On average each year, the city of Phoenix experiences 110 days above 100 degrees and dozens of heat-related or heat-caused deaths. Last summer, when temperatures hovered just below 120 degrees, dozens of flights in and out of Phoenix were canceled, the airlines stating that it was simply too hot for planes to take off. Maricopa County recorded 155 heat-related or heat-caused deaths in 2017, with the number of fatalities significantly spiking during July.

For over a decade, the city of Phoenix has been developing lifesaving strategies in the event of extreme heat. Much of this planning was the result of a catastrophic week in July 2005, when Phoenix and the surrounding Maricopa County area experienced a severe heatwave. There were 30 deaths related to heat exposure in a single week, which included several individuals experiencing homelessness. In response, the Maricopa Assocation of Governments (MAG) convened a conversation with community partners. The result was the Heat Relief Network, a collaboration of nonprofit organizations, faith-based communities, businesses, and municipalities that manage 179 heat relief sites across Maricopa County that provide air conditioning, bottled water, hats, sunscreen, and lip balm.

Brande Mead, Human Services Manager for the Maricopa Association of Governments, believes the community’s response to extreme heat in Maricopa County is replicable in other places, and says similar initiatives are beginning in other areas of the state. “It’s basically a grassroots effort that grew out of the need to provide help to vulnerable populations. And we came together with resources that we already have,” she says.

 *           *           *

The Centers for Disease Control (CDC) defines a cooling center as a “location, typically an air-conditioned or cooled building that has been designated as a site to provide respite and safety during extreme heat.” A recent report analyzed the role of cooling centers as cost-effective and widely-used approaches for preventing heat-related deaths. During a heat wave in 1995, Chicago reported 700 heat-related deaths and thousands of emergency room visits. In response, the city implemented a heat warning system which included cooling centers, and as a result, the city saw 80 percent fewer heat-related deaths during a similar heat wave in 1999.

The CDC also acknowledges challenges with cooling centers, including disseminating location information to the public, as well as resistance by some individuals to the idea of leaving their homes and/or pets for long periods of time. There was also a stated aversion to spending unoccupied hours in public cool spaces with strangers. Others had the perception that cooling centers were only for “old people,” or stated that they already relied on public libraries or malls for air conditioning during hot times of the year.

Despite those challenges, cooling centers are considered one method for increasing community and individual resilience in a changing climate. Initiatives are popping up in cities across the country, including Baltimore, Los Angeles, Detroit, and Las Vegas, as well as in small towns and rural communities. And each government building, library, or church that opens its doors and offers a cooled space for those who need it, contributes to a growing message that cooling is in fact a human right.

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