Daily Archives: July 17, 2023

Governor Kathy Hochul today announced the MTA will begin its fare free bus pilot on five routes, one in each borough, that will now collectively serve 43,900 daily weekday riders by late September this year for a period of six to 12 months. Routes were chosen based on a variety of factors, including ridership, fare evasion, service adequacy, equity for low-income and economically disadvantaged communities, and access to employment and commercial activity.

"The MTA is the lifeblood of New York City, and Im proud of the tremendous progress weve made in returning ridership to pre-pandemic levels," Governor Hochul said. "By establishing these fare free bus pilot routes, we are expanding access to public transportation across the city and improving transit equity to better serve all New Yorkers.

MTA Chair and CEO Janno Lieber said, We have championed innovation and creative thinking across the transportation network and look forward to seeing how New Yorkers respond to this pilot program. I want to thank Governor Hochul and the State Legislature for providing funding that makes it possible to launch this limited experiment.

New York City Transit President Richard Davey said, Our team worked hard to ensure the five routes that were chosen for this pilot will benefit New Yorkers who rely on buses to get them where they need to go. I want to thank Governor Hochul for her leadership and ensuring mass transit remains a safe and affordable option for the millions of riders who use it.

This comes weeks after the first phase of previously announced weekend service increases on the G, J and M lines. These enhancements were made possible by a $35 million contribution from the FY 2024 New York State Budget to increase subway service. The multi-phase approach will increase service across several train lines during weekday midday, weeknights, and weekends, and the second phase will begin next month, where additional midday and weekend service will be added. In addition to the increased service, a second R211 train was put in service on the A line last month.

Buses on routes included in the pilot program will be clearly marked Fare Free with green and black destination signage, digital signage onboard buses, decals inside the bus and covers on farebox and OMNY readers. The pilot will not include free transfers to other buses or subway lines.

The bus routes included in the six to 12 month pilot are:

Bx18 A/B: Operating daily during daytime hours between Undercliff Avenue or Sedgwick Avenue and Grand Concourse/E 170 Street, the Bx18 A/B bus route travels along Macombs Road, Tremont Avenue, Undercliff Avenue/Sedgwick Avenue, 168 Street and 170 Street. It serves Morris Heights, Highbridge and Mount Eden neighborhoods and connects to the 4, B, D trains and several other bus routes. Major employers and institutions covered on the route include Bronx-Lebanon Hospital Center and Bronx Community College.

B60: The B60 bus route operates between Williams Avenue/Flatlands Avenue in Canarsie and Williamsburg Bridge Plaza. The route operates primarily along Rockaway Avenue and Wilson Avenue and serves the Canarsie, Brownsville, Ocean Hill, Bushwick and Williamsburg neighborhoods. It makes connections to the 3, C, L, G, J, M, Z trains and several other bus routes. Major employers and institutions covered on the route include Brookdale University Hospital & Medical Center, Wyckoff Heights Medical Center and NYC Health + Hospitals/Woodhul.

M116: This bus route operates daily during daytime hours between W 106 Street /Broadway and E 120 Street/Pleasant Avenue. The route primarily operates along 116 Street, Manhattan Avenue and W 106 Street and serves the Harlem, East Harlem and Morningside Heights neighborhoods. The route makes connections to the 1, 2, 3, 6, B, C trains and several bus routes. Major employers and institutions covered on the route include St. Lukes Roosevelt Hospital Center, Columbia University and the East River Plaza Mall.

Q4 LCL/LTD: The Q4 LCL/LTD bus route operates between the Jamaica Ctr-Parsons/Archer E, J, Z subway station and Linden Boulevard/235 Street. Some buses operate as Limited-Stop during morning and afternoon rush hours on weekdays. The route primarily operates on Linden Boulevard, Merrick Boulevard and Archer Avenue and serves the Jamaica Center, South Jamaica, St. Albans and Cambria Heights neighborhoods. It makes connections to the E, J, Z trains, the St. Albans Long Island Rail Road station and several bus routes. Major employers and institutions covered on the route include Jamaica Center, York College and the St. Albans VA Hospital.

S46/96: Operating between South Avenue, West Shore Plaza Shopping Center and the St. George Ferry Terminal, he S46 local route operates at all times and the S96 Limited route operates on weekdays only in the peak period, peak direction. The route primarily operates along Castleton Avenue, Victory Boulevard, Walker Street/Brabant Street and South Avenue. It serves the St. George, Tompkinsville, West New Brighton, Port Richmond, Elm Park, Arlington, Bloomfield and Chelsea neighborhoods and makes connections to the SIR and Staten Island Ferry. Major employers and institutions covered on the route include the NY Empire Outlets, Richmond University Medical Center, West Shore Plaza and the Forest Promenade Shopping Plaza.

State Senate Majority Leader Andrea Stewart-Cousins said, The MTA is a central part of New Yorkers daily lives, and I am proud that in this years budget we secured the fare free bus pilot to continue making transportation more accessible. This pilot program comes at a crucial time to help address affordability and ensures we are providing New Yorkers a dependable way to commute to jobs, doctors appointments, schools, and daily errands with reliability.

Assembly Speaker Carl Heastie said, This pilot program will help thousands of New Yorkers who rely on buses to get to work, to school, to get to medical appoints and more. It was a priority for many of my Assembly Majority colleagues, and we look forward to seeing how it impacts our communities. We have one of the hardest working transit systems in the country, and we will continue working to find ways to ensure the MTA can better serve the families who depend on it every day.

State Senate Deputy Leader Michael Gianaris said, "Free bus routes are exactly the type of innovation we need to revolutionize our approach to public transit and get more people back in the system. We have taken the MTA off the express track towards fiscal calamity and are delivering a better system for riders. I appreciate the partnership of Assembly Member Mamdani, Governor Hochul, MTA leadership, and the many advocates who stood up for these important and needed changes.

State Senator Tim Kennedy said, "When we invest in the physical and financial accessibility of New Yorkers, we're ultimately investing in our workforce and our greater economy. We've seen other cities across the country roll out similar fare free programs, only to see a boost in overall ridership across several routes. Our hope is that this program will do the same here in New York, and that we can rebuild and strengthen public transit use in a post-pandemic world."

State Senator Roxanne J. Persaud said, The MTA continues to make significant investments to improve access to transit. Providing free rides on the B60 bus line beginning in the fall will be an asset to the community, and the service will be utilized by thousands of commuters daily. Making transit options accessible and affordable is a step in the right direction.

State Senator Luis Seplveda said, Investing in fare free bus routes is a significant step towards a more equitable and accessible public transportation system. Governor Hochul's announcement demonstrates a commitment to addressing the needs of diverse communities, ensuring that everyone has access to reliable and affordable transportation. By prioritizing factors such as ridership, equity, and access to employment, this pilot program sets the stage for a more inclusive future, where transportation barriers are dismantled, and opportunities for economic growth and mobility are expanded for all."

State Senator Cordell Cleare said, "Too often when we think of the viability and affordability of our communities, we leave transportation out of the conversation. In fact, when transportation is affordable and accessible, our neighborhoods are strengthened because getting to school, work, and medical appointments, are necessary to everyone's quality of life. Picking the route along 116th Street is a wise choice that shows that our State is pinpointing areas where affordability for basic services is becoming more and more difficult. Most of the residents in my district and throughout the City, rely on public transportation. While there is more to be done, this is a welcome step in the right direction."

State Senator Robert Jackson said, "In pursuit of equitable transportation, the MTA embarks on a transformative journey, embracing progress and compassion. I applaud the Governor and commend the MTA for rapidly implementing the groundbreaking fare free bus pilot program instituted in partnership with the NY legislature. This initiative will breathe new life into our transportation system, serving as vital conduits that connect with the pulse of working-class New Yorkers daily. It will ensure that mass transit remains a safe and affordable option for my constituents while providing enhanced services and easier access in our community. The positive and lasting impact of this program will extend beyond my district, benefiting our entire city.

State Senator Jessica Scarcella-Spanton said, "This pilot program is a significant step towards a more equitable transportation system here in New York City. In a similar way to the Staten Island Ferry system, this Free Fare Bus Route will help keep commutes affordable for residents. Whether youre traveling to the ferry or trying to get from Tompkinsville to West Brighton, this particular route will help countless Staten Islanders save money, while also getting them to their destination safely."

Assemblymember Kenneth Zebrowski said, These free bus routes are part of our efforts to innovate in our mass transit system. It has been great to work with Governor Hochul, Janno Lieber, Speaker Heastie and several key assembly members this year to increase service, reliability and affordability.

Assemblymember Zohran K. Mamdani said, Fare free buses will bring economic relief to working class New Yorkers at a time when they need it most. And it is those very New Yorkers who led the fight for this first-of-its-kind pilot - with more than 4,000 of them canvassing their local subway and bus stops, reaching out to their elected representatives, and rallying to make public transit across our City excellent, safe and universally accessible. In Boston and Kansas City, where fare free buses have been implemented, they have sped up travel times, made buses safer, and increased access to essential services. I cant wait to see these same outcomes for our neighbors along routes in each of the five boroughs and I am thankful for the work of all of my colleagues, Speaker Heastie, and the Governor in transforming this dream into a reality.

Assemblymember Erik Dilan said, "Excited that Governor Hochul chose the B60 Bus line for free service. Its a huge win for North Brooklyn Residents, especially for Bushwick where the B60 runs across Wilson Ave. Cant thank Governor Hochul enough, this free service will help people so much in the North Brooklyn area!"

Assemblymember Clyde Vanel said, We are excited that the commuters in our district will take advantage of the fare free bus program. We will continue to work to improve our transportation system.

Assemblymember Maritza Davila said, New York City is progressively growing and our Inter-City transit system has been the backbone of our community, helping commuters get to their destination. The fare free bus service program will not provide more accessibility but can encourage more commuters and potentially reduce traffic congestion. Theres a range of other benefits to this program as it relates to our social equity, environment, health and overall quality of life. Im elated to see the program come into fruition and hope that the people of New York truly benefit from it, as we know our public transposition system is a necessity that is vital to our livelihood.

Assemblymember Inez Dickens said, As many of our residents continue to suffer from the difficulty of extending their dollars to make ends meet, I welcome the proposal from both Governor Kathy Hochul and the Metropolitan Transportation Authority to allow riders to board, for free, multiple bus lines across our city, including the M116 which runs through my district. This is a welcomed relief for those who use it to get across town to access numerous train lines or get to certain destinations within the district. This will be viewed as a much-needed relief for those who use these lines on a day to day basis.

Assemblymember Daniel O'Donnell said, "The need for accessible public transportation in New York City cannot be overstated. It's a pivotal element in the economic advancement of New York City, and I applaud Assembly Member Mamdani's steadfast efforts to champion that every New Yorker should have access to reliable, accessible transit. The MTA's fare free initiative on the M116 bus is a testament to our commitment to creating more equitable public transit choices - a move that brings us one step closer to enhancing the quality of life for all New Yorkers."

Assemblymember Nikki Lucas said, This pilot program for free ridership on the B60 will give or local residents some financial relief as expenses continue to skyrocket on everything from groceries to services. I am hopeful that this pilot program can become permanent for seniors and low income members of my district, who might need to use the B60 for short trips in and around the district.

Assemblymember Amanda Septimo said, Taking steps towards a fare free bus New York City bus system moves us closer to transit justice, and most importantly, economic justice. This fare free bus pilot program will do so much to advance the idea that all New Yorkers deserve access to fast, reliable, safe public transit by removing the barrier of the fare. I am confident that this pilot program will lead to safer working conditions for our transit workers, who will no longer need to enforce fare rules, and create a more positive experience overall for riders. None of this would be possible without the steadfast leadership of Speaker Carl Heastie, who has demonstrated the Assemblys commitment to building a transit system that leaves no one behind.

Assemblymember Latrice Walker said, I was immediately on board with the pilot program, as soon as I learned about it. Im even more excited to learn that relief is coming to people who depend on the B60 bus, which runs through my district. The transit system is uniquely designed to link millions of New Yorkers across the five boroughs to their jobs, schools, churches, medical appointments and to their families. People in my district need this break. The transit system works best when we all have access. Lets roll.

Assemblymember Alicia L. Hyndman said, With the 2023 budget passing in early May, the Fare Free Pilot Program with the MTA passed as well. This program will allow for a free bus line to run in each borough, and in Queens that line will be the Q4. The program will last from six to twelve months, with an anticipatory start date of Fall 2023. The implementation of this program will be a relief to constituents in every borough.

Assemblymember Eddie Gibbs said, Access to public transportation is a life link for thousands of residents in my district. Having the M116 bus route now fare free will lessen the financial burden many of our neighbors will capitalize on to get to where they need to be whether that be work, school, visiting friends and family, or even accessing food and necessary healthcare. When we talk about leveling the playing field for everyone, we have to remember to talk about transportation. Im grateful to the Governor for pushing this important program and excited that the MTA has made it happen.

Assemblymember Yudelka Tapia said, I commend Governor Hochul for launching the fare-free bus pilot program, which will benefit thousands of daily riders in each borough. This initiative demonstrates a commitment to equity, ensuring that all New Yorkers have access to reliable transportation regardless of their economic circumstances. By considering key factors such as ridership, service adequacy, and access to employment, this program will effectively address the needs of our diverse communities, particularly the unique needs for the Bronx and my district, the 86th which includes the neighborhoods of Tremont, Morris Heights, and Fordham among others. The MTA's fare free bus pilot program aligns with our shared goal of promoting affordable and accessible transportation options. By prioritizing the needs of low-income and economically disadvantaged communities, we are ensuring that transportation barriers are lifted, providing vital opportunities for economic growth and social mobility."

Representative Hakeem Jeffries said, The B60 bus is a vital lifeline for many of the communities I am privileged to represent in Canarsie, Brownsville and Ocean Hill. Creating affordable access to transportation is a major step in the push to lower costs, provide good-paying jobs and expand economic opportunity across our city and state. I applaud Governor Hochul and the MTA for bringing this pilot program to life.

Representative Grace Meng said, I have called for free transit for New Yorkers and have cosponsored legislation that aims to eliminate fares on public transportation. I am thrilled to see this pilot program for free buses move forward, and hope it expands throughout our city. Thanks to Governor Hochul for supporting this important initiative.

Representative Adriano Espaillat said, New York Citys public transit is one of the largest in the world and we are making great strides to ensure it continues to be more accessible and affordable for all. The new 2024 New York State Budget provides additional investments in transit to ensure Fare Free buses are available throughout each borough. I commend Governor Hochul on todays initiative of Fare Free buses that will serve tens of thousands of New Yorkers weekly. This is a crucial step to expand our efforts to increase equity for all New Yorkers, and guarantee that everyone has the means to commute to school, medical appointments, work, and so much more.

Representative Dan Goldman said, I am encouraged to see the launch of fare free bus routes across our city to keep New Yorkers connected. Our world class public transit system is the lifeblood of our New York, and this is an exciting and much needed initial expansion of service accessibility for underserved communities who would most benefit. I hope to see this pilot program succeed and grow to serve other communities across New Yorks 10th Congressional district and the rest of city that would similarly benefit.

Deputy Speaker of the New York City Council Diana Ayala said, For low-income and economically disadvantaged communities, transportation costs is an added expense that eats away into their ability to provide themselves and their families with other necessities. The free-fare pilot program for the M116 bus line is a wonderful opportunity to remove the cost barrier associated with transportation and show the positive impact a program like this can have on families.

Councilmember Nantasha Williams said, I am happy to have this community selected for the fare free pilot program and hope it has a positive impact on my constituents. Bus transit is the lifeblood of many in this community. By providing free fares we will improve the lives of riders.

Councilmember Lincoln Restler said, Free buses are faster buses and I am thrilled that the B60 will be taking riders in and out of Williamsburg every day at no cost! Affordable and reliable public transportation pays dividends by creating economic opportunity and improving quality of life.

Councilmember Shaun Abreu said, "The M116 bus line is one of the fastest and only methods to get from one end of Harlem to the other. It runs through the veins of our neighborhoods. An affordability crisis threatens this access, however, putting public transportation out of reach for many New Yorkers. Our city needs to step up. I applaud the MTA for expanding the Fair Fares program to ease the burden on our community and ensure that the M116 is available for those that need it the most.

Councilmember Kamillah Hanks said, I applaud Governor Hochul's announcement of the fare-free bus pilot program on the S46/96 route. This initiative will provide significant benefits to the diverse communities it serves, prioritizing equity, accessibility, and affordability, and will enhance mass transit options for thousands of riders who rely on buses every day.

Councilmember Mercedes Narcisse said, I am in full support of the fare-free bus pilot program and I am happy that the B60, which serves parts of District 46, has been selected as Brooklyns fare-free route. I am confident that this program will help revitalize our local bus routes, grow ridership, and most importantly increase access to our public transportation system for low-income New Yorkers.

Councilmember Pierina Sanchez said, The BX18 fare-free bus route is a significant step forward for Bronxites, benefiting transit-critical residents, over 70% of which live within Council District 14, and ensuring rider equity. This pilot will support economically disadvantaged residents, attract new riders, and improve the overall rider experience. Additionally, considering its environmental impact, such as reducing greenhouse gas emissions and improving air quality, this milestone showcases the Governors commitment to a greener, more equitable, and efficient transportation system, bringing positive changes to this District.

Councilmember Althea Stevens said, "Im pleased with the citys continued investment to ensure that we are creating transportation equity for our communities that are historically underserved. When we remove the barriers of cost, we begin to cultivate a world of opportunities for our community members, regardless of their socioeconomic background.

Manhattan Borough President Mark Levine said, "Making a vital crosstown bus route like the M116 fare free will be a welcome relief to the New Yorkers struggling to stretch every dollar, made all the more valuable by the increased reliability of the M116 thanks to a quicker boarding process. This pilot will be an important model for transit equity moving forward."

Bronx Borough President Vanessa L. Gibson said, Prioritizing accessibility and affordability for transit riders is critical as many of our residents and families continue to experience financial hardship. By implementing the MTAs Fare Free Bus Routes pilot program, the MTA is demonstrating its commitment to transit equity. I want to thank Governor Kathy Hochul and the MTA for this initiative and for prioritizing those most in need.

Read the original here:

Governor Hochul Announces Fare Free Bus Routes Included in MTA ... - ny.gov

WASHINGTON U.S. senators debated Wednesday how best to resolve a funding cliff within Social Security that will lead to a quarter reduction in benefits in about a decade, absent action from Congress.

Democrats on the Budget Committee, led by Chair Sheldon Whitehouse of Rhode Island, called for lawmakers to increase taxes on the countrys wealthiest individuals to ensure that the program stays solvent for decades.

But ranking member Chuck Grassley, the senior senator from Iowa, said that all options, including changes to benefits, should be on the table as Congress begins looking toward a long-term solution for the trust fund.

Whitehouse said the solution is for the wealthy to pay more of a share in taxable earnings. Right now the cap on Social Security contributions means a tech executive making $1 million effectively stops paying into the program at the end of February while a school teacher making far less contributes their share through every single paycheck all year, Whitehouse said.

The Democrat noted hes introduced legislation that would require people making more than $400,000 in wages or more than that amount in investment income to pay into the Social Security system. The cap for maximum taxable earnings is currently set at $160,200.

These reforms raise enough revenue to make Social Security solvent indefinitely, according to a new estimate from the Social Security actuary Mr. Steve Goss, Whitehouse said.

Grassley argued that any legislation to address the funding issues within the Social Security trust fund should follow the model that Republicans and Democrats used in 1983, when they passed bipartisan legislation to address financial issues within the program.

While I hope we wont wait until the last minute, the only way to reach a deal on Social Security is to follow the Reagan-ONeill model; that means Congress and the president working in a bipartisan fashion and keeping a range of options on the table, Grassley said. Currently, Democrats control the White House and Senate and Republicans the House, making agreements difficult to reach.

Grassley wasnt specific in his comments about possible changes to Social Security and didnt mention raising the age to receive full Social Security benefits. He did, however, criticize Democratic bills that would raise taxes.

These are tax-heavy messaging bills and not real solutions, Grassley said.

Goss told the committee during the hearing that the most recent trustee report on the Social Security trust funds projects the Old Age and Survivors Trust Fund will be depleted in 2033, leading to a situation where the federal government could pay just 77% of scheduled benefits at that time. Goss is the chief actuary for the Social Security Administration.

If that trust fund were combined with the Social Security disability trust fund, that timeline would extend one year later to 2034, with benefits at that time dropping to 80% of whats currently scheduled.

This current situation should come as no surprise, as the trustees have been projecting combined fund reserve depletion between the years 2033 and 2035 ever since 2012, Goss said.

Kathleen Romig, director of Social Security and disability policy at the Center on Budget and Policy Priorities, told the committee that inequality within the United States has skyrocketed since Congress made changes to the program four decades ago.

Cutting Social Security benefits, Romig testified, would compromise the lifestyles of our seniors and people with disabilities, who often use the money to pay for basic needs like housing, food and health care.

The financial security that Social Security provides is especially important to helping women and people of color stay out of poverty, Romig said.

Women tend to earn less over their lifetimes, have smaller retirement accounts and in addition they tend to live longer, Romig said.

The same is true for people of color, she added. People of color have faced economic inequality throughout all of this nations history and theyre less likely to have retirement at work, less likely to have jobs with a margin for savings. And so Social Security is especially important for those groups.

Without Social Security, Romig testified that more than half of Black retirees and more than 45% of Latino retirees would be in poverty.

Andrew G. Biggs, senior fellow at the American Enterprise Institute, told the committee that he believes the maximum annual Social Security benefit is too high, saying that $43,000 per year is far more than is needed to protect against poverty in old age.

Biggs said that in the long-term Congress should slow the growth of benefits for middle- and high-income retirees while increasing benefits for the bottom third to truly guarantee against poverty in old age.

Lawmakers should also make sure that every employee has a retirement plan available to them on the job and automatically enroll them in that retirement plan, he testified.

If everybody were saving as they should and could for retirement, Social Securitys job is much easier, Biggs said.

The rest is here:

Higher taxes on the wealthy would bolster Social Security, U.S. ... - Idaho Capital Sun

Illustrations by Katherine Lam

Subomi Mabogunje fell for Nkechi Egonu within hours of meeting her in 2004, in his hometown of Ijebu-Ode, a trading hub in southwest Nigeria. They worked at a state-run broadcast TV station, thrown together by the National Youth Service Corps. He was speechless on the day Nkechi first walked into work. While Subomi was thin and bespectacled, she was petite and zaftig, with her hair in a ballerina bun, and coldly immune to the stares that trailed her across the office. Her swaggering personality was also the opposite of his reserved one; she was outspoken in the stations weekly news meeting, and top brass quickly promoted her to program presenter. She was the most exciting person, Subomi felt, who had ever walked into his hometown.

He found the courage to speak to Nkechi one weekend when they were assigned to do community service, clearing overgrown grasses near a government building. Subomi went, despite his habitual avoidance of strenuous physical activity. Youre too good for this kind of work, ehe? Nkechi teased, furrowing her brows. Locals discount, he joked, and she laughed. With his hollow cheekbones, frail body, and elongated fingers, he was clearly what some uncharitable onlookers would call a sicklerone of up to six million people in Nigeria with sickle cell disease, a group of inherited blood disorders that turn red blood cells from soft discs into rigid crescents, frequently leading to blood clots that can cause pain episodes, called crises, and serious complications in most major organs. But Nkechi never shied away from him. A few days later, the offices radio transmitter stopped working, so Nkechi and Subomi had nothing to do except talk. After work, they made a beeline for a local dive bar housed in a car wash. Within a few weeks, they were inseparable.

From the beginning, Nkechi knew that she and Subomi had no business dating. His genotype was SS: he had two abnormal S genes for hemoglobin, the oxygen-carrying protein in his blood. Nkechis genotype was AS: she had one abnormal S gene and one normal A gene. Like an estimated quarter of all Nigerians, she was a silent carrier. There was a 50percent chance that any child they had would suffer from sickle cell disease like their father. This was no light prospect. Subomis own childhood had been marred by secrecy and shame over his condition. Nkechi, meanwhile, had lost four cousins to the disease. Those deaths might be understood as products of an earlier, benighted time, when the average Nigerian knew far less about genetic testing and disease management. Today, however, there was a growing consensusparticularly in their college-educated, upper-middle-class milieuwhen it came to passing on two sickle cell genes: dont risk it.

But how, and when, do you weigh risk against attachment? Nkechi revealed her genotype just days after meeting Subomi, and he didnt stop loving her. He liked that she held her ground, didnt worry about the future, and could make even his stolid father laugh. She also had a quick temper, but he preferred her foot-stomping, door-slamming outbursts to his quieter family life, shuttling between two parents who often lived apart. But why, dude? Nkechi asked him in those early months, in her broad, Americanized diphthongs. He wasnt sure, he said. She was something that had happened to him, like a coconut dropping on your head while youre walking down the street.

By the end of her service year, Nkechi had fallen in love with Subomi, too, but she thought it shouldnt last. In March 2005, she moved back to Lagos alone. Subomi simply followed her. In April 2006, she broke up with him at a fried chicken restaurant, screaming about how stupid, how uneducated, it would be for them to stay together. They reconciled a week later. She broke up with him again in January 2008, sitting in his parked car. That separation lasted a month.

Nkechi was just shy of thirty when she initiated their third breakup in late July 2009. She met him on a Friday evening at home and calmly told him that they had to find other people to marry before it was too late. As the oldest of six, she was starting to feel uneasy that neither she nor her siblings had married or started families, unusual for Nigerians of their generation. She had even talked to a genetic counselor at the Sickle Cell Foundation Nigeria (SCFN), in Lagos, who had advised her to end the relationship. (Though a representative from the foundation told me that this is against their policies.) There were too many obstacles. A marriage is not just between two people, Nkechi reminded Subomi. They talked and cried for three hours as the sun set, and she kept crying all the way home on the lurching bus. They were tears of grief, but also relief. She had finally, and responsibly, severed this unwieldiest of attachments.

Subomi didnt sleep much that night. Early the next morning, he started driving to his fathers house in Ijebu-Ode. That afternoon, something told Nkechi to call him to make sure he had arrived safely. Subomis boss picked up the phone.

Is Subi there? she asked, confused.

Oh, its you, Nkechi. I was actually just about to call you, Nkechi recalls him saying over a crackling connection. Subomis had an accident.

Less than an hour outside Lagos, Subomis sedan had been rear-ended, hit a truck, and flipped over. Paramedics had taken him to the hospital and dialed the last received call on the phone they fished from Subomis pocket. Nkechis mouth went dry. At dawn, she began a long bus journey to the hospital, where she ran into Subomis mother. They found Subomi in the ICU, in a coma.

Nkechi held his mothers hand as the doctor explained Subomis prognosis. It could be hours, days, weeks, or months before he woke up, if he woke up at all. Nkechi had to work on Monday, but she returned to Ibadan on Friday afternoon, inaugurating a regular weekend pilgrimage. She sat by Subomis bed all day, napping at a nursing students dorm nearby. Perhaps, his doctor offered, playing Subomis favorite songs or movies could help. Nkechi made him a mixtape with his favorite songs by Kenny G, Enya, and the Nigerian gospel singer Tim Godfrey, which she had played on a loop day in and day out. His mother started to visibly relax whenever Nkechi walked through the hospital doors. Nkechi, for her part, put their breakup out of her mind.

On Saturday, September 5, she showed up as usual and was stunned to find Subomi awake. She screamed with joy and clasped his hands.

Happy birthday, Nkechi, he told her.

Everyone near his bed turned to her and paused. Was he crazy? But it was, in fact, her thirtieth birthday; Subomi had glanced at the date on some paperwork. Nkechi started to laugh. Everyone then agreed that he could go home soon, and he was discharged a few weeks later.

Subomi still faced a long road to recovery, and he was intermittently bedridden. Nkechi substituted her weekend trips to Ibadan with visits to his mothers house in Lagos. She guided him through complicated stretches, gave him sponge baths, and crawled on the floor beside him as he learned how to walk again. Remarkably, he was on his feet within six monthsand, despite everyones concern, didnt suffer any sickle cell crises during his convalescence. When Nkechi got up to leave, he started to ask her when they were getting married.

We are broken up, she would remind him.

I have no recollection of that, he would say. Or did you forget I was in a monthlong coma? It was hard for her to gauge his sincerity.

In the new year, Subomi could not only walk but drive again, and as he regained strength, the flame of Nkechis attraction flickered. She didnt try to put it out. For once, none of their family members were asking probing questions about the future. One afternoon in August, when Nkechi was making sure Subomis bed was comfortable, he pulled a pink tourmaline ring from his pocket.

Later, Nkechis mind would cycle through the past six yearstheir chance meeting in Ijebu-Ode, those afternoons at the car-wash bar, breaking and making up in Lagos, the accident, his convalescenceand she would wonder if they were making the right choice. But in that moment, and without hesitation, she said yes.

Nigeria is the sickle cell capital of the world. Its residents account for about half of all new annual cases of severe hemoglobin disorders worldwide. Sickle cell disease is one of the worlds most prevalent autosomal recessive genetic disorders; the sickle cell trait is over six times more common in Nigerians than the cystic fibrosis gene is among people of Northern European descent, or the Tay-Sachs gene among Ashkenazi Jews.

In the Fifties, a number of scientists speculated that the sickle cell trait confers some resistance to malarianow a widely accepted theorywhich would account for the prevalence of the gene in sub-Saharan Africa, home to over 90percent of all malaria cases in the world. Over millennia, per this hypothesis, as more AS than AA children survived acute malaria infections and reached reproductive age, they passed on their single S genes, too. But for those with two such genes, the potential complications include acute pain episodes, acute chest syndrome, strokes, priapism, jaundice, numb chin syndrome, an enlarged spleen, leg ulcers, and damaged blood cells in the retina, which can lead to blindness.

The heritability of sickle cell anemia, the most common and severe form of SCD, is about as straightforward as a Punnett square from a middle school biology textbook: if both parents are carriers (AS/AS), their children have a 25percent chance of having the disease. If one parent has the disease (SS) and the other has no sickle cell genes (AA), theres a 100percent chance their kids will be carriers (AS) and a 0percent chance they will have the disease. A couple like Nkechi and Subomi, where one parent has the disease and one is a carrier, has a 50percent chance of giving birth to an SS child and a 50percent chance of an AS child. Every year, a growing number of people in Nigeria consider breaking up because of this calculation.

Dr. Olufemi Akinyanju, an eighty-six-year-old Nigerian hematologist, started identifying sickle cell patients as a young doctor in Lagos in the Sixties, fresh out of medical school in London. The patients had often never heard of the disease, and he went on to spend most of his career studying it. In 1994, he founded the Sickle Cell Foundation Nigeria in Lagos, now one of the regions preeminent treatment and diagnosis centers. His generation of doctors helped SCD testing take root in Nigeria. The most common blood test is hemoglobin electrophoresis, in which electrical currents are passed through a blood sample, separating different types of hemoglobin into discrete bands. The test is now commonplace in urban centers like Lagos and Abuja. Testing in a high-end facility can cost up to forty dollars, but there are also free and cheap clinics, which can provide results in as little as thirty minutes.

More and more Nigerians are now being encouraged to test at an early age. Nkechi, who was born in 1979, has known her genotype since she was seven. Testing is less accessible outside major cities, especially in the countrys poorer northern states. And in lower-end clinics, results are often inaccurate. Ezekiel Ogbu, a thirty-six-year-old bus driver with SCD in Lagos, found this out the hard way in 2018, when he discovered that his fiance was not AA, as she had long believed, but AS. They broke up two weeks before their wedding, following her third blood test, and he informed more than five hundred guests that the ceremony was off. Many Nigerian sickle cell activists now recommend two or three different blood tests to be sure.

Determining your genotype is one thing, but puzzling out its implications is another. Absent strict or uniform laws, decisions about dating often fall to individuals. Genotype screening is now a requirement to get married in many Nigerian churches and mosques, but some young people are starting higher upstreamas early as the first date. Given Nigerias emphasis on marriage, combined with its relatively low incidence of prenatal testing and the illegality of abortion in most cases, a social norm is rapidly consolidating to dissuade two people with sickle cell genes from marrying, or even dating. But not everyone makes this choice. A 2015 study found that one in five people who realized they were in AS-AS relationships from their premarital screenings got married anyway.

Some lawmakers have tried to intervene in this gray area. States in both the north and the south have passed measures to mandate premarital testing; in 2020, the Nigerian Senate debated an SCD management bill that, among other things, would also encourage premarital tests. During these discussions, Chukwuka Utazi, a senator from Enugu State, implied that he had suffered a genotype-related breakup of his own. He understood what a painful choice it could be. But in Africa, he maintained, we marry for children, we dont marry for love. (Nigeria already polices the intimate sphere: public displays of same-sex affection are illegal, for example, and punishment for same-sex intercourse can range from prison time to execution by stoning.) Another senator chimed in: We will not allow love to take away the best part of our marriages.

Heterosexual Nigerian couples who come to these genetic crossroads are not merely grappling with whether to break up or get married. They are also considering what makes a good life, both for themselves and for their prospective children. SCD is not a death sentenceespecially in a city like Lagosbut it is usually a life sentence. Its two most effective treatments, bone marrow transplants and gene editing, are out of reach for ordinary people. Most Nigerians with SCD must deal with painful crises, procure expensive medications, seek out specialists, and confront stigma, including obstacles to someday starting a family of their own. Should such people come into existence at all? The question sounds crude or even amoral, but when Nigerian carrier couples split up, their implicit answer is no.

Their concerns are broadly relevant to the rest of us who live in the age of genetic testing and its novel theaters of decision-making. Prospective parents find themselves asking: Which diseases should we test for? How risky is it to pass on a certain trait? Which conditions truly compromise a childs future, and which are ultimately manageable? How much can you really control? And what is worth sacrificing to be with the person you love? As genetic testing continues to spread, many more people, in many more places, will try to answer these questions. In Nigeria, they are already part of daily life.

Perched on the Bight of Benin, Lagos is home to some fifteen million people and is the center of Africas largest economy. The stretch marks of the developing world are visible everywhere: cheap cell phone data sold at hand-painted stalls, piles of refuse, strip malls that pop up overnight like mushrooms, awe-inspiring traffic, and unflinching sales-children who dash through it. The city abuts the Lagos Lagoon, where a vast slum is held up on stilts and fishermen still use dugout canoes to catch red snapper and mackerel. Sometimes, as the Nigerian playwright Wole Soyinka once wrote, one feels that the worlds discards, the detritus of the constantly surging ocean, eventually come to rest on the beaches of Lagos.

Last year, I made several trips to this amphibious megacity to meet Nigerians who have navigated dating, love, and marriage under the star of their sickle cell genotype. Its one of the likeliest places in Nigeria to have a few partners before marriage; it is also where the greatest number of Nigerians go to work. Like all cities, its filled with strivers trying to make rational decisions about their future; a 2021 study of over 1,300 city-dwelling Nigerians found that 29percent of respondents had ended a relationship due to genotype incompatibility. In this city rife with choice and its discontents, there may be more than 3.5 million people with the sickle cell trait.

Among the Lagosians I met were: several individuals who had broken up with their carrier boyfriend or girlfriend in their twenties; a forty-something couple who, upon discovering their daughter was SS, belatedly realized they both had AS genotypes; a single mother of three whose husband left her after two of their SS children started having severe crises; several older single women with the sickle cell trait who had given up on marriage altogether; and a woman in her seventies with SCD who had been happily married for over fifty years. I heard about people who had forged their genotype test results, people who hid their status from their spouses, and couples who lied to get married in their house of worship. People explained their weighty decisions to me straightforwardly, as if recalling what they had for lunch. Everyone I spoke to was religiouseither Christian or Muslim, Nigerias two major faithsand expressed the belief that any outcome, be it heartbreak, late-in-life romance, or a child with surprise SCD, had, to some degree, been willed by God.

Its not that young Lagosians are pure fatalists or cold-blooded optimizers; some do allow themselves genetically risky attachments, even if theyre not meant to last. I met Blessing Assam, a twenty-five-year-old pastors daughter and accounting student with dreams of running a large business, who has an AS genotype. Blessing has worked a series of tough jobs to put herself through university, including serving as a live-in care worker for a woman with severe SCD. She has been dating Samson, a handsome twenty-nine-year-old entrepreneur, who also has an AS genotype, for two years. They video chat every night; he speaks to her in a soft voice and lets her order anything she wants whenever they go out without glancing at the price. But both told me they will have to break up. Blessing saw severe SCD at work, and three of Samsons family members have died of the disease. They dont want to risk it. I need to wake up from my dreamworld, she told me over lunch. She made a noose gesture and cocked her head to one side.

Other Lagosians who have SCD themselves dream of a relationship as an escape to a better life. Princess Samuel, a thirty-year-old with cut-glass cheekbones and a silvery voice, grew up sharing her churchs spare room with her mother and younger siblings after her fathers death. Her family could barely afford mild painkillers, but she stoically endured frequent vaso-occlusive crises, which happen when sickled red blood cells congeal and deprive tissues of oxygen. At university, she met and fell in love with a medical student who promised he didnt care about her genotype. For three years, they kept her status a secret from his less tolerant parents. Then, in 2017, she had an acute crisis and was rushed to the hospital. Her boyfriend feared for her life and called in favors to fast-track her treatmentincluding with his mom, who was a nurse at the hospital where Princess was admitted. She helped Princess get priority treatment, and then promptly demanded that they break up. They did, and he married someone else last October.

Princess has had a few flirtations since then, but all have faded when she has been sick or hospitalized. Last spring, she quit her job and moved back in with her mother, who lives in a cinder-block house on the citys outskirts. Every Sunday, Princess wakes up as early as 4:30am to commute to The Elevation Church in Ikorodu, which has a dedicated service for unmarried congregants. Last year, she had three more vaso-occlusive crises. The most serious one, in March, left her with a hospital bill that cost nearly as much as her mothers yearly rent. SCD is expensive, both acutely and chronically: prevention regimens of vitamins, painkillers, and antibiotics (up to $30 a month, for Princess), hospital admissions (sometimes $150 per day at a private hospital), blood transfusions (often over $100). These all hit harder given Nigerias flailing economy and rapidly weakening currency. Thats not just for patients, but also for their prospective partners and in-laws. People think the cheapest is just to walk away, really, Timi Edwin, a thirty-five-year-old SCD advocate who has the disease, told me. She speaks from experience: Timis fianc left her six years ago because of her condition.

Princesss mother is still optimistic. Sure, she says, its a little harder for people with SCD to marrybut maybe Princess should also try a little harder to meet single men. They are marrying, she mused, about sickle cell patients shes met through her church. Some even to wealthy people who are able to take care of them. She went on: I believe God will give her a wealthy husband too, she said. Im praying seriously toward it.

Nkechi and Subomi got married twice: first in an Igbo wedding in her familys village in Mbaise, in the same house where her parents married, and then in a Yoruba ceremony in Ijebu-Ode. The Igbo wedding was on December 3, 2010, and Nkechi turned out, against expectations, to be a calm and happy bride. She wore a lilac crepe wrapper, tied like a skirt, and a coral-bead headdress. Subomi wore a shirt printed with roaring lions, a traditional Igbo motif. A week later, in Ijebu-Ode, Subomis cousin washed Nkechis feet as she stepped in, as a bride, to a house that she already knew so well. They skipped a third church wedding, which also let them sidestep premarital genotype testing requirements.

Nkechis sister Uche met Subomi several times when they dated, and found him strikingly thoughtful. Once, when he couldnt make it to a lunch they had planned in Lagos, he mailed her a check so she could take herself out on her interns salary. My entire familys only concern, really, was the genotype, Uche told me. I asked her several times, are you readyreally readyif you have an SS child? And was she very sure his family knew she was a carrier too? But then she did a fantastic job taking care of him after the accident, Uche said. It felt silly to keep probing. Whereas an accident like that, for me, would have been a time to reevaluate things, said Chijioke Nwamara, a childhood friend, for Nkechi it just strengthened her resolve to press ahead.

As a wedding present, Subomis parents gave them a two-bedroom house in their Lagos compound. Both families were in high spirits through Christmas, including Nkechis one-hundred-year-old grandmother, who was overjoyed that her grandchild was finally embarking on her adult life. Nkechi and Subomi didnt tell her, or anyone else, that they had decided, as a condition of staying together, not to have children.

As newlyweds, they could finally live together, and they loved their city. They spent weekends at Lagoss nightclubs and urban beaches, and went to separate churches on Sunday mornings. Sometimes, they collaborated on graphic design work. They were modern, unconventional, independent; colleagues, freelancers, best friends. But things started to change around their first anniversary. More nights were spent staying home to watch TV than out on the town. Subomi, who had grown up lonely, started to feel lonely again, like there werent enough people at home. He began twisting Nkechis arm: What if they tried for a baby? Theres got to be more to life than this, he told her. Please? Just one?

They found themselves attending their friends babies naming ceremonies and birthdays, and then Nkechis younger brothers started having children, too. Her resolve to remain child-free gradually waned. She struck up tentative conversations with doctors, who told her that the science of SCD management had advanced in leaps and bounds, and that babies born with an SS genotype could live to old age. At thirty-two, Nkechi decided to stop taking her birth control pill. Looking back, she thinks she was inviting fate to intervene in a battle of the wills between two awfully stubborn people.

Nothing happened for four years. Nkechi knew she was on the older side for pregnancy, but she started to avoid the subject with Subomi, who could slip into a dark mood when he ruminated on his unfulfilled dreams of fatherhood. But in early 2016, after days of a sore throat and nausea, a pharmacist forced Nkechi to take a pregnancy test. It was positive. When she told Subomi, he burst into tears.

But they had to think of the big question in the same breath. Testing the fetuss sickle cell genotype would require an invasive test at the Sickle Cell Foundation Nigeria, and Subomi begged her not to do it, both because the procedure posed a small risk of miscarriage and because it had taken them so long to conceive. Nkechi called family members on both sides for advice, and she remembers many of them saying the same thing: there had been vast improvements in SCD management, and anyway, a 50percent chance was far from a guarantee. A week passed as Nkechi mulled it over, during which time the fetus started to kick, and she realized she could not go through with an illicit abortion, whatever the genotype was. Well, she told Subomi, here we go. Whats the worst that could happen?

Nkechi went into labor the night of Donald Trump and Hillary Clintons last presidential debate, which she and Subomi watched in their living room. When the sun came up on October 20, he drove her to the hospital. By noon, she was admitted for a cesarean section. The baby had nestled close to her rib cage and had to be massaged out by two nurses. Nkechi woke up from the anesthesia in a cold sweat and learned that her babyher sonwas in another room, where nurses were starting him on a ventilator after he had ingested his own stool on the way out. When Nkechi saw him for the first time, he was on intravenous antibiotics. She didnt expect to feel so attached to this small personso responsible for him. They brought him home two days later. The name Subomi had picked out for him was Oluwagbotemi, Yoruba for God heard my cry. But given the complicated birth, he decided to revise his sons name to Momoreoluwa, meaning I know the grace of God. Momo, for short.

Subomi was overjoyed. He spent all day with Momo, rambling to him about current events, changing his diapers, bathing him, and watching him sleep. He started reciting Yoruba phrases well before Momo could talk, so hed become worthy of his florid name. He took to calling him his mini me. But Subomi was also on edge until they brought three-month-old Momo for a sickle cell screening. When it indicated that he was just a carrier, they were walking on air.

Seven months later, Momo woke up sobbing, with swollen hands. It was, as Nkechis mother quickly recognized, dactylitis: swelling of the fingers or toes due to blocked blood vesselsits a classic early symptom of SCD. But what about the genotype test? His fetal hemoglobin, which lingers for months, may have confused the results. His parents had been advised to bring him in for another test on his first birthday, but they had hoped it would be perfunctory. Nkechi bundled Momo into their car and drove to the hospital where hed been born. A new blood test confirmed that he was SS. That night, he started his daily program of antibiotics and antimalarial pills.

Subomi was too distressed to be of much help. Part of his grief, Nkechi knew, came from the painful memories of his own childhood, when distant relatives told him hed die before he was ten, and his parents, wary of stigma, warned him to avoid mentioning his disease. He used to sit miserably on the sidelines at soccer games and take countless days off from school. But Momos case was different from Subomis. He had been diagnosed early, life expectancies for patients had risen, and his parents knew much more about managing the disease. Subomi had never developed a solid regimen of preventive medication as a child; Momo was started on one before his first birthday. And Nkechi was going to be open about her sons condition, not hide it. You can do better for Momo than your parents did for you, she told Subomi. They were both anxious after Momos diagnosis, but after months of keeping infections at bay, they relaxed slightly. They even felt cautiously optimistic. Maybe they hadnt been totally reckless, after all, in rolling the genetic dice. Maybe the worst that could happen wasnt that bad.

The age of relatively cheap genetic testing has created a new term for those in Nkechi and Subomis situation: genetically at risk. Genetic risk does not imply resignation in the face of an implacable biological destiny, wrote the sociologists Carlos Novas and Nikolas Rose in 2000; it induces new and active relations to oneself and ones future. Such thought also reshapes prudence and obligation, because those who are genetically at risk must make the right choices, both for their own sakes and for those of their families. These actors try to exercise genetic responsibility, a concept coined in 1974 by the medical researchers Peter T.Rowley and Mack Lipkin Jr. They argued that the nascent field of genetics would compel more and more individuals to act responsibly, especially by avoiding the spread of genetic diseases. While the science may be new, they wrote, the problem is not. Whether to suffer or to not live at all has been debated since Job.

There are not yet universal standards for genetic testing, but a narrow consensus has emerged around specific conditions. The first prenatal diagnosis for Down syndrome was made in 1968. Since then, screenings have become routine for pregnant women in many parts of the world. In Iceland, for instance, the vast majority of women choose to be screened, and up to 85percent of those who learn of an increased likelihood of the disorder choose to terminate the pregnancy. This shared idea of genetic responsibility has resulted, locally, in the conditions virtual disappearance, though a few babies with Down syndrome are still born there each year. But the polarized debates around the practice show that genetic responsibility is far from a neutral, or standardized, concept. The situation in Iceland has drawn global ire, and some have argued that these abortions offer a backdoor to eugenics.

But people in societies where abortion has been illegal or discouraged have also created local norms, in which decisions are made earlier in the process of family formation, and often more communally. That was precisely the case with beta-thalassemia, another recessive genetic blood disorder, in Cyprus. In the Sixties, up to eighty babies with the condition were born there each year, and in the Seventies, local physicians began to strongly encourage carrier screening, counseling, and prenatal testing, eventually pressuring the Cypriot Orthodox Church to request premarital screening certificates. In 1986, the number of babies born with beta-thalassemia dropped to zero. Tay-Sachs disease is another example. In 1983, an ultra-Orthodox Brooklyn rabbi who lost four young children to Tay-Sachswhich causes damage to nerve cells and leads most patients to die before age fivestarted Dor Yeshorim. The organization, whose name is Hebrew for upright generation, is a premarital screening service that has rapidly become central to matchmaking in many ultra-Orthodox communities. Today, Dor Yeshorim representatives draw blood samples from Orthodox students, test them for several genetic diseases, and store the results in a confidential database. Early in a prospective match, the couple can call Dor Yeshorim, and if the individuals are both carriers for the same disease, they are simply told that the match is not advisable.

Both of these examples were enacted in relatively small, homogenous communities. But its hard to closely follow either playbook in a massive, multiethnic democracy like Nigeria. Instead, over the past half-century, Nigerians have forged their own notions of genetic responsibility.

In 1986, Dr. Akinyanju led the first trainings of genetic counselors in Lagos. In the beginning, they worked primarily with families who already had SS children, but, by the Nineties, they started to see far more prospective couples, according to Ayo Otaigbe, who was among Nigerias first class of trained genetic counselors. Over five hundred SCFN-trained counselors now work in a number of African countries where SCD is prevalent, from Ghana to Tanzania, and they are the most professionalized tip of an iceberg that includes public health campaigns, widespread testing, and rising awareness of SCD in popular culture. (Sickle cell been show me crises, the Afropop singer Adekunle Gold sang in last years single 5 Star, which he has remixed with Rick Ross. I will never forget the Nineties/Many nights I go dey beg for mercy.) The watchword of SCFN-trained counselors is non-directive: they provide information but do not compel specific action, and they especially avoid discouraging marriage or procreation. This fits with the global rise of non-directive genetic counseling in the Fifties, which emphasized voluntary measures in the shadow of Nazi atrocities. The manual used by SCFN to train counselors advises them to avoid phrases like if I were you and Im terribly sorry for you.

Sickle cell counseling never took off in the same way in the United States, even though about one in thirteen black babies are born with the sickle cell trait. In 1972, Congress passed an act that encouraged voluntary sickle cell genotype testing among black Americans, and sickle cell screening was even a part of the Black Panther Partys public health initiatives. But people started hollering genocide pretty fast, recalls Dr.Wally Smith, who now directs Virginia Commonwealth Universitys SCD program. He says the idea of a public health program directed at black Americans was hampered by widespread distrust of the government and medical authorities. Smith believes they might have given up too soon, lamenting a 2017 poll in which only 36percent of the black Americans surveyed even knew that they had an elevated risk of SCD.

Nigerian experts are split on the future of SCD in their country. In just a couple generations, awareness has skyrocketed and free clinics have proliferated. Though statistics are scarce, those working in the field believe the number of cases has fallen, especially in urban centers. But the uptake of testing and shift in social norms has been polarized along socioeconomic lines. Fewer children in middle- and upper-class homes seem to be born SS, observed Toyin Adesola, the executive director of an SCD advocacy organization. That means the disease is slowly concentrating in poorer communities. In Kano State, part of the less-developed, Muslim-majority north, prevalence of the sickle cell trait has been reported to be as high as 41percent, compared with about 25percent nationwide.

We dont see eradication as the goal, at least for now, said Dr. Annette Akinsete, the national director of the Sickle Cell Foundation. And she does not think laws to stop carrier unions will ever find a foothold. Instead, she hopes to see more widespread newborn screening so that patients can get a head start managing the condition, as well as free or subsidized antibiotics and supplements.

In high-income countries, the median survival age for a patient with SCD has risen to between forty and sixtymore than double what it was in the Seventies. In such places, SCD has evolved from a life-threatening pediatric condition to a chronic disease among adults. The average survival age in Nigeria is much lowerlikely under five, though statistics are not widely availablebecause of the high infant mortality rates in poor regions. But a middle-class Nigerian patient with access to resources, especially in Lagos, has a very good chance of managing their condition into adulthood, says Dr. Akinsete. Most Nigerian medical professionals dont see their goal as zero future SCD cases, but somewhat fewer of them, and a much higher quality of life for those born with the condition.

In the United States today, pregnant women can find out whether their unborn child has cystic fibrosis, fragile X syndrome, spinal muscular atrophy, or many other conditions. Prospective parents can quickly determine their carrier status for hundreds of disorders, from primary congenital glaucoma to maple syrup urine disease to a bone disease that increases the likelihood of fractures. People with no thoughts of parenthood, too, can get a basic genetic profile in a matter of weeks; for about two hundred dollars,23andMe can detect ones carrier status for over two dozen conditionsand also estimate the likelihood of someday developing breast cancer or Alzheimers. Without public health initiatives, its unlikely that these advancements will dramatically reduce the prevalence of any particular condition. They will, however, put more people in positions like that of Nkechi and Subomi: having genetic information in the back of their minds while dating, falling in love, and starting a familyand deciding whether theyre willing to intervene on the basis of that information.

When science moves faster than moral understanding, as it does today, men and women struggle to articulate their unease, the political philosopher Michael J.Sandel has written on parenting after the genomic revolution. In liberal societies, they reach first for the language of autonomy, fairness, and individual rights. But this framework quickly reveals its limits. In developing and developed countries alike, many families, engaging in the most optimistic of enterprises, eventually reach a point where meaningful choices evaporate, confronting all manner of shortcomings both before and after birththose stemming from health outcomes, but also those of resources, community, and chance. In the age of genetic testing, more information does not always mean fewer obstacles; conversely, it may entrench parents struggle for control. Discrete decisions tend to give way, as Sandel puts it, to questions about the moral status of nature, and about the proper stance of human beings toward the given world.

Momo grew the same whorled hair on his head that Nkechi has on her arms, but he had Subomis dark complexion, slim feet, dark lashes, and occasional indignant frown. He refused to walk until he was two, and then quickly proceeded to somersaults. And he refused to eat solid food unless Nkechi took off her shirt, as if she were about to breastfeed him; only then could she shovel forkfuls of rice into his mouth, drawing peals of laughter from Subomi. Momo cheerfully moved from lap to lap at church and was sanguine when Nkechi left him with his aunt, who disciplined him alongside her own children. He turned two without another crisis. Nkechi decided to bring him to Mbaise for Christmas in 2018. Subomi stayed in Lagos to celebrate with his mom and sister.

When Nkechi got home, she noticed something on Subomis leg as they got ready for bed: a yellowing ulcer, the size of a grape, over his left ankle. Come on, man, she said. I leave you for a week and this happens? It was nothing to worry about, he protested. It didnt even hurt. Leg ulcers are relatively common in adults with SCD. Subomi resisted going to a doctor, and Nkechi hoped it would resolve itself. Instead, it expanded to the width of a lime. Then Subomis feet started to swell, and in February, a pinprick-size ulcer opened up over his right ankle. It grew into an equally large crater by Valentines Day, when they could not make it out of the house for dinner.

On February 21, Subomi woke up at around a quarter to six, screaming in pain. A friend drove him to the hospital, where he was immediately admitted to the emergency ward. Nkechi was relieved; she had won the battle of convincing Subomi to see a doctor at all. Momo was in high spirits when he waved goodbye to his dad.

When Nkechi arrived an hour later, doctors had started Subomi on antibiotics and dressed his wounds. He told her that he would be discharged in a few days. It could have been much worse, said the doctor, and they had brought him in at the right time. Why didnt you bring me strawberry yogurt? Subomi ribbed Nkechi. You better get home soon, she warned him. Momo is waiting for you.

The next morning, Nkechi woke up earlier than usual, around 5am. She called Subomis nurse, and then his doctor, but neither picked up. She felt a surge of adrenaline. As if on autopilot, she put on a T-shirt and quietly drove to the hospital. When she got there, the doctor told her that Subomi had suffered a sudden embolism in his intestine. He was dead.

Nkechis ears started to ring.

It can happen to anyone, the doctor continued. The direct cause, in Subomis case, remains impossible to ascertain. Blood disorders like SCD are straightforward risks for blood clots, which are the primary cause of embolismsbut so are factors like age, certain medications, and high cholesterol. Its not the kind of thing that can be proved conclusively; someone with an AA genotype could have suffered the same fate.

The details didnt interest Nkechi. Her husband was dead. The doctor started expressing his sympathy, but she cut him off. She told her family, who wailed at the news, and then returned home to tell Momo, who, like his mother, was stoic. Her heart was racing and her internal monologue ran on an obsessive loop: Nkechi, whats your next move? She was now a single mother, with a son who needed intensive medical supervision. Would she relocate somewheremaybe California, where her brother lived? Would she stay where she was? Would she continue their business? There had to be a funeral next week.

Subomi was buried in Ijebu-Ode, in front of friends who came from as far as Canada. Nkechi sleepwalked through it. None of her friends or family remember her crying.

Three months after his father died, Momo had a crisis: splenic sequestration. Nkechi noticed that he had suddenly become very quiet, and his stomach was unusually bloated. He stayed in the hospital overnight and received a blood transfusion. Some time later, Subomis father called Nkechi to ask about the house he had given the couple as a wedding present; he was considering renting the place out, though he never did. In 2021, Momo had another crisis: sepsis. Its trigger was a bacterial infection of unknown provenance, and he spent ten days in the hospital on antibiotics. Nkechis mother-in-law dropped in for a brief visit on the fifth day.

When Nkechi had married Subomi a decade prior, the bride price his family paid made her, on paper, a daughter of Ijebu-Ode. But few arrangements are permanent, and today, raising Momo is largely Nkechis solo undertaking. In 2021, she withdrew Momo from his paternal grandmothers school and enrolled him in a different one two miles away. Nkechi and Momo now go to Mbaise for holidays. They rarely find occasion to test their status, by marriage and by birth, as daughter and son of Ijebu-Ode.

By the time I met Momo, shortly before his sixth birthday, the acute dramas of his diagnosis had subsided. Nkechi has told her son that he has special blood. Momo is about a meter talla little small for his age, but not by muchand his slightly distended stomach is visible under his butter-yellow school uniform. Nkechi lectures all his teachers about keeping him hydrated and avoiding intense sports. Momo isnt shy about his condition, even if he doesnt fully comprehend it. Ive been to the hospital like a hundred times! he told me cheerfully. (Nkechi brings him to a government pediatric hospital every three months.) He and Nkechi have settled into their new equilibrium. I asked him about his last crisis, when he was on intravenous antibiotics. I was on the drrrip! he exclaimed, trilling his rs. Sometimes, Momo is the one to remind his mom to give him his pills, which he crunches like candy. Money can be tight, so Nkechi prioritizes Momos medications and economizes elsewhere. As far as she knows, Momo is the only student in his kindergarten class with the disease. But some parents are weird about this, she admitted. So who knows.

Momo has a sunny temperament and speaks with the diction of someone who interacts mainly with adults. I miss the old days, he said one day, out of the blue, with my dad! Nkechi raised an eyebrow. Shes not convinced he actually remembers Subomi. Momo is an in-demand playmate at church and the ringleader of his many maternal cousins. When home alone, hes resourceful: a paper fan is a baseball bat, crumpled paper a soccer ball. One of his plastic toy soldiers is named Subomi.

The goal of SCD management, Dr. Akinyanju has written, is extending the steady-state period between crises. Momo has cleared the early-life danger zone for infections. But children with fewer resources can be far less lucky. In Lagos, I also met Tawakalitu Ayinde, a poor, unemployed single mother of four daughters, the last of whom has SCD. Nine-year-old Oluwaseyifunmi had seven strokes between 2017 and 2022; the last one, in January 2022, left one of her legs paralyzed and her speech garbled. She is still not on any regular medications.

As Momo gets older, malaria may trigger crises, but its unlikely to be fatal. Viral hepatitis will remain a lifelong risk. He might reach puberty later than his peers. Recent research has suggested a genetic component to leg ulcers, which means Momo may be at higher risk for them, so he may start wearing compression bandages. And someday, he will have to accommodate the fact that stress, like the kind that comes from relationships or work, may trigger crises too. It all seemed far away, until I noticed Momo kissing a T.rex puppet over Christmas in Mbaise. Hold on, he told me, Im doing something romantic.

Even today, while Nkechis friends and family almost universally disapprove of carrier marriages, they concede that Momo doesnt really look like a sickler. During Nkechis sisters wedding in Mbaise, a family friend, Sunny Opara, explained why he thought that educated people shouldnt risk having SS children while Momo and his cousin streaked by. I pointed out that Momos life chances were vastly better than those of previous generations with the disease, but Opara insisted that prevention is better than the cure. As Momo tore through the house, filled with four generations of people who loved him, I wondered what everyone would really prefer: a world in which genetically-at-risk Nkechi had made the supposedly responsible choice to break up with Subomi, or this one, in which she took a chance.

Someday, Momo might be a candidate for a bone-marrow transplant. The Sickle Cell Foundation Nigeria has just started evaluating patients for its first ever in-house transplant program, but so far, only a handful of well-to-do Nigerians have received the treatment, usually abroad, paying up to $500,000. Nkechi isnt counting on this. Throughout her life, her great strength, and great flaw, has been her laser focus on the present. She never wants Momo to feel the shame that racked her husband. Just three months after Subomi died, Nkechi started doing outreach again for the Sickle Cell Advocacy and Management Initiative. I know he would have supported me speaking out, she said. Though maybe thats a low bar, because he supported everything I did.

As Nkechi and Momo left church one Sunday, a male friend in the parking lot warned her about the effects of single motherhood on a young boy like Momo. Dont bring him up as a woman! he joked.

Momo stood up in the back seat and screamed, I am strong!

Nkechi snorted, and stepped on the gas. What do they know?

Read more:

Love in the Time of Sickle Cell Disease, by Krithika Varagur - Harper's Magazine