Karen Petrou’s arrangement is bare. A lath and chair, a computer, a sofa. There is no art on the wall. In this bashful space—in a not-so-modest Dupont Circle building—Petrou runs a consultancy, Federal Cyberbanking Analytics, area she has become one of the best affecting cyberbanking adjustment experts in the world. On a accustomed day, she fields dozens of calls from government officials, bankers, investors, and reporters, all of whom appetite her ascribe on some abstruse authoritative affair that alone a tiny cardinal of animal beings understand.
For addition with that akin of accomplishment, you would apprehend her walls to be lined with pictures of her assuming with important people. You ability additionally apprehend an big-ticket painting or sculpture, article to aback her composure and status. But Petrou has no charge for these ornaments. She wouldn’t be able to see them.
Petrou, who is sixty-five, is no able on medical technology or biologic research. But afterwards a awful acknowledged career—the American Banker alleged her “the sharpest apperception allegory cyberbanking action today—maybe ever” in 2012—Petrou has accomplished her ability on the assignment of abating blindness. She has accomplished a point in her activity and career at which she wants to use her able ability to accomplish an appulse alfresco her acreage and eradicate the antecedent of her greatest claimed adversity.
Petrou is the artist of a bill alien in Congress aftermost July that would actualize alleged Eye Bonds, a amalgamation of loans, backed by a bound government guarantee, to abutment analysis into amaurosis cures that would contrarily stall.
The acumen abaft the bill, alleged the Faster Treatments and Cures for Eye Diseases Act, is that the abridgement of a cure for amaurosis is not a accurate problem; it’s a cyberbanking one. For years, translational research—the point at which science is angry into a artefact by aggravating it on animal patients in the achievement of accepting FDA approval—has been referred to as the “valley of death.” In endless cases, able therapies and added interventions can’t get the allotment they charge aback it’s time to analysis treatments on people.
For Petrou, who started activity dark as an adolescent, this has been acutely frustrating. But aftermost December, the Federal Biologic Administration accustomed a gene analysis alleged Luxturna that can essentially advance apparition in accouchement adversity from a attenuate anatomy of childhood-onset blindness. It was one of the few drugs that got accomplished the basin of death. Petrou believes that if Luxturna’s fate were not such a attenuate exception, her fate could be afflicted too. “I accept that if we could get this able analysis accomplished the basin of death, I could see in ten years,” she said.
Karen Petrou grew up in the flush boondocks of Briarcliff Manor, a Wester County suburb arctic of New York City. She was apprenticed and ambitious, a acceptable apprentice who backward out of trouble. But she wasn’t acceptable at sports. “I knew I didn’t absolutely see things the way others did.” But, she said, “I aloof affected I was a abominable amateur because I couldn’t acquisition a softball.”
It wasn’t until she hit her adolescence that she noticed article was off. “It never absolutely occurred to me until I took driver’s ed and accomplished that the double-yellow band wasn’t absolutely in my band of vision,” she said. At eighteen, she was diagnosed with retinitis pigmentosa, a abiogenetic ataxia that causes a breakdown and accident of beef in the retina. The doctor said she would be dark by the age of twenty-five. “It was not a acceptable day about my family,” Petrou recalled.
In fact, Petrou angry out to accept a slower adaptation of the disorder: she didn’t lose her account eyes until she was in her mid-thirties and didn’t charge a adviser dog until she was fifty. But she lived the blow of her adolescent years in alarming of what was to come. Today, she is about absolutely blind. She declared her activity as one of “constant improvisation”—learning to alive with beneath and beneath afterimage and adapting to advances in technology. Her phone’s voiceover capabilities accept fabricated things abundant easier, and with the blueprint of a computer keyboard absolutely built-in in her memory, she apparently types faster than you do.
Petrou recognizes that as a adolescent of privilege, she had added opportunities than best others who lose their afterimage early. Afterwards admission from Wellesley College, she advised briefly at MIT, and acceptable a master’s amount at the University of California, Berkeley. Sexism was a connected affection of her bookish career, which able her for a activity in accumulated America while activity blind. “I was already acclimated to bodies cerebration I wasn’t declared to be area I was,” she said. “That was acceptable action training.”
After earning her amount from Berkeley, Petrou became an administrator at Coffer of America’s Washington, D.C., office. She rose through the ranks fast, acceptable a carnality admiral by age twenty-seven. But her aisle adjourned aback her bang-up said that while he’d like to advance her to chief carnality president, he wasn’t adequate adorning a woman to that role. “After that, I absitively to alpha my own firm,” she said. In 1985, she cofounded Federal Cyberbanking Analytics.
Along with actuality one of the best coveted cyberbanking consultants in town, Petrou has additionally been a part-time accessible intellectual, belief in on acute authoritative issues afore affecting audiences like Congress, the Federal Reserve, and the Brookings Institution. Her able assessment has frequently been quoted in the New York Times and the Coffer Street Journal. And she’s currently autograph a book, which will be appear this bounce by Yale University Press, about how authoritative behavior afterwards the 2008 cyberbanking crisis affronted the nation’s abundance divide.
As a dark person, Petrou is a aberration not alone in the cyberbanking aristocratic but in the workforce, period. “More than 70 percent of dark adults in America are unemployed,” she said, accurately citation the best contempo statistics. “Because the average of blindness, in my opinion, is worse than the absolute disease. Parents are abashed that their accouchement will be the agnate of pencil sellers their accomplished lives.”
Petrou has defied those stereotypes, but she is still not allowed to casual humiliations. At a contempo banquet party, she was sitting aing to her bedmate aback addition asked him, rather than her, “What would she like to eat?” There are added assault to the spirit. Recently, Petrou was benumbed the elevator with a aide and with Zuni, her adviser dog. Addition man asked her aide how old his German Shepherd was. “He was acutely talking to him, because a dark actuality with a dog is clueless,” Petrou said.
Petrou’s affiliation with Zuni runs deep. Every day they biking calm by Metro from her home in Northwest Washington to her arrangement a Dupont Circle. There are some people, however, for whom the dog is a problem. “There are bodies I apperceive who won’t accept us over to their house, because we won’t go anywhere afterwards the adviser dog,” said her husband, Basil Petrou, who forth with Karen is a managing accomplice at Federal Cyberbanking Analytics. “It’s not a pet. The adviser dog is working. We’re not allurement to accompany our pet to the house, but bodies don’t understand.”
Karen added, “We don’t like them anyway.”
The abstraction for Eye Bonds began in 2013 at a Foundation Fighting Amaurosis (FFB) lath affair in Boston. Petrou and her adolescent lath associates talked to adventure capitalists, who explained why it was so adamantine to armamentarium translational research. Clinical trials, they said, were too risky—the adventitious of the treatments declining and investors accident money was high. Alike if they are successful, translational analysis can booty from eight to seventeen years, admitting best adventure capitalists appetite a five-year payout on their investments.
Because of that reality, attempts to fix beheld impairments accept acquired little momentum. While bags of account get through basal research, they tend to appear to an brusque standstill. Best of the allotment comes from the National Institutes of Health (NIH) and clandestine foundations, like the FFB. By themselves, these organizations cannot accommodate abundant abutment for the ambit of able analysis options. The FFB, Petrou said, gets almost 100 admission applications every year, about ten of which its scientists accede awful promising. It can alone armamentarium one or two.
Ben Yerxa, the foundation’s CEO, said his alignment put $2 actor into groundbreaking analysis at the University of South Carolina, area scientists are alive on developing a new chic of compounds as neuro-protective agents for retinitis pigmentosa, which affects almost one in 4,000 Americans, including Petrou. But USC needs added money to analysis those compounds out on patients. “Those situations account us to blemish our active and admiration what’s amiss with the system,” Yerxa said.
To accomplish abiding added able amaurosis treatments fabricated it through the basin of death, Petrou realized, she bare to accomplish the analysis added adorable to investors. That’s area Eye Bonds appear in. The bonds are artlessly a way of packaging federally backed loans to advisers who currently attempt to get funding. The bonds would array calm several able amaurosis treatments, so that instead of accepting to accomplish a chancy bet on one baby researcher—like the lab at USC—an investor’s accident would be diversified. The federal government would additionally abate the accident by guaranteeing up to bisected the accommodation principal. (The bill alien in July would authorize a pilot affairs acceptance the government to agreement up to $1 billion in loans. It would additionally acquiesce the government to booty disinterestedness in the research.)
Each year, four or bristles bonds would be issued, anniversary for no added than $250 million. The National Eye Institute, a analysis of the NIH, would baddest the analysis projects to be adjourned by the bonds. Alike if alone one of these projects got accustomed by the FDA and became a bartering success, Petrou argued, the accumulation would pay off all the added loans. The investments would be added protected, she explained, by appliance bookish acreage rights—namely, biologic patents—as collateral.
“It’s the aforementioned abstraction as a mortgage,” she said. “You booty out a accommodation and get a house. If you don’t pay aback the loan, [the bank] can booty your house. If annihilation pans out, all the loans accept to be paid back.” The alone way Eye Bonds would end up costing the taxpayers money is if none of the projects panned out and the accessory became abandoned over time.
After Petrou aggregate her abstraction with the FFB leadership, they began crafting a aldermanic angle and recruiting associates of Congress. One administrator they fabricated an consequence on was Congressman Fred Upton, a Michigan Republican who sponsored the 21st Century Cures Act, legislation that speeds the action by which drugs and added medical articles accept FDA approval. It was one of the aftermost pieces of legislation Barack Obama active into law. “The added day, I was at a above chief bazaar in Kalamazoo and there was a table set up for the visually disabled,” Upton told me. “We’d like to acquisition a cure for this.”
Petrou hopes her angle will accept applications far above allowance to cure blindness. “There are millions of Americans and their families adversity from ache and affliction that scientists accept they can cure, treat, and prevent,” she said. “If the alone affair that’s befitting ache and affliction from actuality antipodal is money, this bill is an alpha way to bout the missing money at the basin of death.”
Some detractors of the bill altercate that it does not abode the absolute acumen translational analysis has so abundant agitation award funding. “There’s bags of basic block acceptable interventions,” said Ezekiel Emanuel, carnality provost for all-around initiatives at the University of Pennsylvania, area he additionally chairs the Department of Medical Ethics and Health Policy. “The botheration is that the money is attractive for aerial allotment in diseases that will pay a lot of money.”
Blindness cures don’t accept the aforementioned advantageous upside as treatments that not alone accept ample appliance but additionally crave around-the-clock usage. Unlike arrect dysfunction, which requires a man to booty a us every time he wants to accept , or an all-overs disorder, which requires a us every day, a amaurosis cure will acceptable alone crave a brief, ancient treatment. That puts a absolute on its profitability. (Or, as the actor Chris Rock put it about twenty years ago, “There ain’t no money in the cure—the money’s in the medicine!”) The abiding border for any abeyant advance is additionally unappealing to adventure capitalists, who ache for quick returns.
But Petrou understands all that. It’s why the Eye Bond is advised to ambition an absolutely altered basin of funding. “Who has abiding money?” said Basil, her husband, who helped her advance the idea. “The acknowledgment is allowance companies and alimony funds.”
In added words, if Eye Bonds work, it will be by creating a new, low-risk advance artefact area one didn’t abide before—one that appeals to institutional investors attractive for longer-term places to esplanade their money, and fatigued to the affiance of a fractional federal loan guarantee.
Petrou additionally said that the upside may be college than bodies think, because beheld affliction is added great than abounding realize. That’s abnormally accurate afterwards two wars in Afghanistan and Iraq; almost 10 to 13 percent of action injuries are now eyes related. Meanwhile, with an crumbling population, macular decline is becoming more common.
It all adds up. According to the National Eye Institute, amaurosis and eyes disorders amount the government $145 billion a year. By 2050, aback the NIH expects amaurosis cases in the U.S. to accept angled from its accepted levels, that amount could ability $700 billion.
Petrou is arena a continued game. It’s about absurd to canyon such an aggressive plan through a disconnected Congress, area adventurous proposals about die. And the bill’s champions on Capitol Hill admit that its chances, at atomic this year, are abbreviate at best. “Let’s face it,” Upton said. “We’re backward in the year and there aren’t a lot of aldermanic canicule left.” But alike if there is no movement soon, he said, that doesn’t beggarly it will fail. “We’ve absolutely laid the foundation for it to be reintroduced next year.”
Petrou is aiming to antechamber assembly added aggressively already the new Congress convenes in January. “If it succeeds, all the scientists in the acreage acquaint us that with a billion dollars they will cure blindness, in around all of its assorted forms, because the science is so far advanced,” she said. That’s alone the alpha of her great optimism. She sees Eye Bonds as a aboriginal footfall against architecture “a bio-bond bazaar that expands to blight or Alzheimer’s or Parkinson’s or any cardinal of added diseases and disabilities.”
Until then, she will not be resting. Earlier this month, she was on the Metro aback a mother approached her. “Can I ask you something?” Petrou recalled the mother saying. “My son is five. He’s activity blind. Can he get a dog? I appetite him to be able to go to school.” I asked Petrou how generally this happened. “All. The. Time,” she said. Afterwards addition pause, she added, “With a adviser dog, I can’t affected it anymore.”
One way she has dealt with her amaurosis is by cloudburst herself into her work. Too abundant rumination, aback you’re trapped in a dark body, can be dangerous. You accept to accumulate moving. “There’s a big debate: Is it bigger to lose your afterimage all at already or over time?” she said. “Well, already you’ve apparent the adorableness of the world, you affectionate of absence it.”
She tries, as best she can, not to anticipate about it too much. “There’s no choice,” she said. “I ambition there were. The ambition of Eye Bonds is for there to be one.”
After our conversation, Petrou had to leave for an appointment. She knows the arrangement well, and needs little advice accepting to the appointment allowance or the elevator or her assistant’s desk. All she needs is Zuni. Already beckoned, the dog would be by her side. Afterwards adhering a bridle to Zuni’s harness, Petrou would accord an instruction. Within minutes, they would be bottomward the elevator and out the door, assimilate 19th Street.
It was a admirable October afternoon. Washingtonians were out en masse for what ability accept been one of the aftermost attractive abatement days. Petrou would see none of it. Reflexively, she would aloof ask Zuni to advance her to the Metro. She still had assignment to do.
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