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    4 Common Mistakes To Avoid With Car Restorations

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    Signs That It Might Be Time To Get a New Car

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    Mercedes-Benz to Launch Global Branded High-Power Charging Network in North America

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    Ways To Surprise Your Partner Who Loves Cars

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    5 Important Tips for Every New Jeep Owner

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    The Best Ways To Increase the Value of Your Car

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    Why Jeeps Are Awesome for Off-Roading Adventures

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    Los Angeles implemented a new tax on luxurious real estate to finance affordable housing and combat homelessness

    Los Angeles implemented a new tax on luxurious real estate to finance affordable housing and combat homelessness

    Working shorter hours: 38 companies in the USA are testing the 4-day week

    Working shorter hours: 38 companies in the USA are testing the 4-day week

    World’s largest trial in the UK: 86 percent want to keep 4-day week

    World’s largest trial in the UK: 86 percent want to keep 4-day week

    Rewarding “Good” Companies—How the Economy for the Common Good Wants to Change the World

    Rewarding “Good” Companies—How the Economy for the Common Good Wants to Change the World

    Redistributing 11 billion dollars: Colombia’s left-wing president wants to fight poverty with a wealth tax

    Redistributing 11 billion dollars: Colombia’s left-wing president wants to fight poverty with a wealth tax

    Ban or regulate: The world searches for a way to deal with cryptocurrencies

    Ban or regulate: The world searches for a way to deal with cryptocurrencies

    Bolivia: Less poverty and booming economy through nationalisation of mineral resources

    Bolivia: Less poverty and booming economy through nationalisation of mineral resources

    “Creating Prosperity Together”: How the social economy model saved the English city of Preston

    “Creating Prosperity Together”: How the social economy model saved the English city of Preston

    Amazon continues to destroy new goods and returns 

    Amazon continues to destroy new goods and returns 

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    • Fashion
      Essential Tips for Planning a Great Fashion Show

      Essential Tips for Planning a Great Fashion Show

      Signs That Your Tuxedo Doesn’t Fit Right

      Signs That Your Tuxedo Doesn’t Fit Right

      Make a Bold Style Statement With These Wide-Leg Pants

      Make a Bold Style Statement With These Wide-Leg Pants

      Power Your Winter Workouts With The Best Zip Hoodies for Men

      Power Your Winter Workouts With The Best Zip Hoodies for Men

      The Ultimate Watch Buying Guide

      The Ultimate Watch Buying Guide

      Outdoor Enthusiasts, Take Note: These Watches Are as Tough as You

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      Our 7 Favorite Field Jackets for Tackling Fall Weather

      Our 7 Favorite Field Jackets for Tackling Fall Weather

      The Best Leather Jackets for Guys – No Matter Your Budget

      The Best Leather Jackets for Guys – No Matter Your Budget

      Campus-Ready Backpacks for Storing *All* the Books

      Campus-Ready Backpacks for Storing *All* the Books

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        Cheese Tortellini in Creamy Marinara

        Cheese Tortellini in Creamy Marinara

        Unusual Products That Come From Animals and Their Uses

        Unusual Products That Come From Animals and Their Uses

        Tips for Creating a Homemade Wine Cellar

        Tips for Creating a Homemade Wine Cellar

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        How the Wine You Choose Can Help You have an Eco-Friendly Home

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        The Most Beautiful Liquor Bottles in the World

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          California Confronts the Threat of ‘Tranq’ as Overdose Crisis Rages

          California Confronts the Threat of ‘Tranq’ as Overdose Crisis Rages

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          Our 300th Episode!

          As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage

          As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage

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          Health Care Coalition Jockeys Over Medi-Cal Spending, Eyes Ballot Initiative

          How a Medical Recoding May Limit Cancer Patients’ Options for Breast Reconstruction

          How a Medical Recoding May Limit Cancer Patients’ Options for Breast Reconstruction

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          Cardiovascular Disease Is Primed to Kill More Older Adults, Especially Blacks and Hispanics

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          Newsom and Democratic Lawmakers at Odds Over Billions in Health Care Funds

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          Many People Living in the ‘Diabetes Belt’ Are Plagued With Medical Debt

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          A Catch-22 for Clinics: State Bans Limit Abortion Counseling. Federal Title X Rules Require It.

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            Ways To Make Your Partner Feel Loved and Appreciated

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            Tips for Growing a Fuller and Healthier Beard

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            Fulfilling Side Hustles for Good Money in 2023

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            5 Tips on How To Run Your First Charity Event

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              OpenSecrets releases report on out-of-state donations’ rising role

              OpenSecrets releases report on out-of-state donations’ rising role

              Independent Sen. Krysten Sinema continues using liberal platforms to fundraise for 2024 reelection campaign

              Independent Sen. Krysten Sinema continues using liberal platforms to fundraise for 2024 reelection campaign

              Watchdog bites Ron DeSantis for alleged “soft money” campaign finance violation

              Watchdog bites Ron DeSantis for alleged “soft money” campaign finance violation

              Press Release: Over 30,000 White House financial disclosures to be made public in first for transparency and accountability

              Press Release: Over 30,000 White House financial disclosures to be made public in first for transparency and accountability

              Pro-Ron DeSantis super PAC to inherit state-level PAC war chest to support presidential run

              Pro-Ron DeSantis super PAC to inherit state-level PAC war chest to support presidential run

              Definition of ethics

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              Spyware firm NSO Group continues lobbying efforts to resume business-as-usual in the U.S.

              Spyware firm NSO Group continues lobbying efforts to resume business-as-usual in the U.S.

              Joe Manchin vows to block “radical climate agenda,” rakes in oil and gas industry contributions

              Joe Manchin vows to block “radical climate agenda,” rakes in oil and gas industry contributions

              Adam Schiff heads into California’s 2024 U.S. Senate race with a sizable cash advantage

              Adam Schiff heads into California’s 2024 U.S. Senate race with a sizable cash advantage

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                Ways To Invest in Real Estate With No Experience

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                How To Make Your Rental Property More Eco-Friendly

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                Things To Consider Before Investing in Real Estate Overseas

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                Incredible Areas in Florida To Buy a Vacation Home

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                Helpful Home Staging Tips for Virtual Tours

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                Ways To Decorate and Design a Lake House

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                Challenges To Managing a Rental Property

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                The Best Landlord: How To Show Tenants You Care

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                The Best Locations To Invest in a Second Home

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                • Automotive
                  Tips for Crossing Water in Your Jeep Wrangler

                  Tips for Crossing Water in Your Jeep Wrangler

                  4 Helpful Tips for Giving Your Car a Glossy Finish

                  4 Helpful Tips for Giving Your Car a Glossy Finish

                  4 Common Mistakes To Avoid With Car Restorations

                  4 Common Mistakes To Avoid With Car Restorations

                  Signs That It Might Be Time To Get a New Car

                  Signs That It Might Be Time To Get a New Car

                  Mercedes-Benz Charging Network

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                  Ways To Surprise Your Partner Who Loves Cars

                  Ways To Surprise Your Partner Who Loves Cars

                  5 Important Tips for Every New Jeep Owner

                  5 Important Tips for Every New Jeep Owner

                  The Best Ways To Increase the Value of Your Car

                  The Best Ways To Increase the Value of Your Car

                  Why Jeeps Are Awesome for Off-Roading Adventures

                  Why Jeeps Are Awesome for Off-Roading Adventures

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                  • Mercedes-Benz
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                • Business
                  Los Angeles implemented a new tax on luxurious real estate to finance affordable housing and combat homelessness

                  Los Angeles implemented a new tax on luxurious real estate to finance affordable housing and combat homelessness

                  Working shorter hours: 38 companies in the USA are testing the 4-day week

                  Working shorter hours: 38 companies in the USA are testing the 4-day week

                  World’s largest trial in the UK: 86 percent want to keep 4-day week

                  World’s largest trial in the UK: 86 percent want to keep 4-day week

                  Rewarding “Good” Companies—How the Economy for the Common Good Wants to Change the World

                  Rewarding “Good” Companies—How the Economy for the Common Good Wants to Change the World

                  Redistributing 11 billion dollars: Colombia’s left-wing president wants to fight poverty with a wealth tax

                  Redistributing 11 billion dollars: Colombia’s left-wing president wants to fight poverty with a wealth tax

                  Ban or regulate: The world searches for a way to deal with cryptocurrencies

                  Ban or regulate: The world searches for a way to deal with cryptocurrencies

                  Bolivia: Less poverty and booming economy through nationalisation of mineral resources

                  Bolivia: Less poverty and booming economy through nationalisation of mineral resources

                  “Creating Prosperity Together”: How the social economy model saved the English city of Preston

                  “Creating Prosperity Together”: How the social economy model saved the English city of Preston

                  Amazon continues to destroy new goods and returns 

                  Amazon continues to destroy new goods and returns 

                  Trending Tags

                  • Fashion
                    Essential Tips for Planning a Great Fashion Show

                    Essential Tips for Planning a Great Fashion Show

                    Signs That Your Tuxedo Doesn’t Fit Right

                    Signs That Your Tuxedo Doesn’t Fit Right

                    Make a Bold Style Statement With These Wide-Leg Pants

                    Make a Bold Style Statement With These Wide-Leg Pants

                    Power Your Winter Workouts With The Best Zip Hoodies for Men

                    Power Your Winter Workouts With The Best Zip Hoodies for Men

                    The Ultimate Watch Buying Guide

                    The Ultimate Watch Buying Guide

                    Outdoor Enthusiasts, Take Note: These Watches Are as Tough as You

                    Outdoor Enthusiasts, Take Note: These Watches Are as Tough as You

                    Our 7 Favorite Field Jackets for Tackling Fall Weather

                    Our 7 Favorite Field Jackets for Tackling Fall Weather

                    The Best Leather Jackets for Guys – No Matter Your Budget

                    The Best Leather Jackets for Guys – No Matter Your Budget

                    Campus-Ready Backpacks for Storing *All* the Books

                    Campus-Ready Backpacks for Storing *All* the Books

                    Trending Tags

                    • Food & Drink
                      Cheese Tortellini in Creamy Marinara

                      Cheese Tortellini in Creamy Marinara

                      Unusual Products That Come From Animals and Their Uses

                      Unusual Products That Come From Animals and Their Uses

                      Tips for Creating a Homemade Wine Cellar

                      Tips for Creating a Homemade Wine Cellar

                      How the wine you choose can help you have an eco-friendly home

                      How the Wine You Choose Can Help You have an Eco-Friendly Home

                      Rum and Cola Holiday Ham

                      Special Centerpieces for Holiday Celebrations

                      ChefsGiving 2020

                      This Holiday Season, How about Cooking for a Cause?

                      Iced Cold Moscow Mule cocktail with lime and pomegranate

                      Holiday Spirits: The Cranberry Smash Moscow Mule

                      The Most Beautiful Liquor Bottles in the World

                      The Most Beautiful Liquor Bottles in the World

                      Tao Group Virtual Chef Experience

                      Entertain Your Guests Virtually This Fall ?

                      Trending Tags

                      • Health
                        California Confronts the Threat of ‘Tranq’ as Overdose Crisis Rages

                        California Confronts the Threat of ‘Tranq’ as Overdose Crisis Rages

                        Our 300th Episode!

                        Our 300th Episode!

                        As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage

                        As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage

                        Health Care Coalition Jockeys Over Medi-Cal Spending, Eyes Ballot Initiative

                        Health Care Coalition Jockeys Over Medi-Cal Spending, Eyes Ballot Initiative

                        How a Medical Recoding May Limit Cancer Patients’ Options for Breast Reconstruction

                        How a Medical Recoding May Limit Cancer Patients’ Options for Breast Reconstruction

                        Cardiovascular Disease Is Primed to Kill More Older Adults, Especially Blacks and Hispanics

                        Cardiovascular Disease Is Primed to Kill More Older Adults, Especially Blacks and Hispanics

                        Newsom and Democratic Lawmakers at Odds Over Billions in Health Care Funds

                        Newsom and Democratic Lawmakers at Odds Over Billions in Health Care Funds

                        Many People Living in the ‘Diabetes Belt’ Are Plagued With Medical Debt

                        Many People Living in the ‘Diabetes Belt’ Are Plagued With Medical Debt

                        A Catch-22 for Clinics: State Bans Limit Abortion Counseling. Federal Title X Rules Require It.

                        A Catch-22 for Clinics: State Bans Limit Abortion Counseling. Federal Title X Rules Require It.

                        Trending Tags

                        • Lifestyle

                          The History and Meaning of Memorial Day

                          Ways To Make Your Partner Feel Loved and Appreciated

                          Ways To Make Your Partner Feel Loved and Appreciated

                          Values and principles, even when faced with temptations, challenges, or potential negative consequences.

                          Acknowledging Racism within Familial and Social Circles: An Examination of Cognitive Dissonance and Socio-Cultural Factors

                          Definition of ethics

                          The Interconnectedness of Racial Opinions and Ethics

                          Sacrifice States: the US Nuclear Sponge

                          woman with gun near thief at night in parking lot

                          Why it’s Important to know Your 2nd Amendment Rights

                          Tips for Growing a Fuller and Healthier Beard

                          Tips for Growing a Fuller and Healthier Beard

                          Fulfilling Side Hustles for Good Money in 2023

                          Fulfilling Side Hustles for Good Money in 2023

                          5 Tips on How To Run Your First Charity Event

                          5 Tips on How To Run Your First Charity Event

                          Trending Tags

                          • Politics
                            OpenSecrets releases report on out-of-state donations’ rising role

                            OpenSecrets releases report on out-of-state donations’ rising role

                            Independent Sen. Krysten Sinema continues using liberal platforms to fundraise for 2024 reelection campaign

                            Independent Sen. Krysten Sinema continues using liberal platforms to fundraise for 2024 reelection campaign

                            Watchdog bites Ron DeSantis for alleged “soft money” campaign finance violation

                            Watchdog bites Ron DeSantis for alleged “soft money” campaign finance violation

                            Press Release: Over 30,000 White House financial disclosures to be made public in first for transparency and accountability

                            Press Release: Over 30,000 White House financial disclosures to be made public in first for transparency and accountability

                            Pro-Ron DeSantis super PAC to inherit state-level PAC war chest to support presidential run

                            Pro-Ron DeSantis super PAC to inherit state-level PAC war chest to support presidential run

                            Definition of ethics

                            The Interconnectedness of Racial Opinions and Ethics

                            Spyware firm NSO Group continues lobbying efforts to resume business-as-usual in the U.S.

                            Spyware firm NSO Group continues lobbying efforts to resume business-as-usual in the U.S.

                            Joe Manchin vows to block “radical climate agenda,” rakes in oil and gas industry contributions

                            Joe Manchin vows to block “radical climate agenda,” rakes in oil and gas industry contributions

                            Adam Schiff heads into California’s 2024 U.S. Senate race with a sizable cash advantage

                            Adam Schiff heads into California’s 2024 U.S. Senate race with a sizable cash advantage

                            Trending Tags

                            • Real Estate
                              Ways To Invest in Real Estate With No Experience

                              Ways To Invest in Real Estate With No Experience

                              How To Make Your Rental Property More Eco-Friendly

                              How To Make Your Rental Property More Eco-Friendly

                              Things To Consider Before Investing in Real Estate Overseas

                              Things To Consider Before Investing in Real Estate Overseas

                              Incredible Areas in Florida To Buy a Vacation Home

                              Incredible Areas in Florida To Buy a Vacation Home

                              Helpful Home Staging Tips for Virtual Tours

                              Helpful Home Staging Tips for Virtual Tours

                              Ways To Decorate and Design a Lake House

                              Ways To Decorate and Design a Lake House

                              Challenges To Managing a Rental Property

                              Challenges To Managing a Rental Property

                              The Best Landlord: How To Show Tenants You Care

                              The Best Landlord: How To Show Tenants You Care

                              The Best Locations To Invest in a Second Home

                              The Best Locations To Invest in a Second Home

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                              For Patients With Sickle Cell Disease, Fertility Care Is About Reproductive Justice

                              by Staff Writer
                              December 8, 2022
                              in Health
                              For Patients With Sickle Cell Disease, Fertility Care Is About Reproductive Justice
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                              By Farah Yousry, Side Effects Public Media

                              Teonna Woolford has always wanted six kids. Why six?

                              “I don’t know where that number came from. I just felt like four wasn’t enough,” said Woolford, a Baltimore resident. “Six is a good number.”

                              Woolford, 31, was born with sickle cell disease. The genetic disorder causes blood cells to become misshapen, which makes it harder for blood to carry oxygen and flow throughout the body. This can lead to strokes, organ damage, and frequent bouts of excruciating pain.

                              Sickle cell disease affects an estimated 100,000 people in the U.S., and the vast majority of them are Black. Federal and charitable dollars dedicated to fighting sickle cell disease pale in comparison to what is spent to combat other, less common diseases that mostly affect white patients.

                              Physicians and researchers said the disease is a stark example of the health inequities that pervade the U.S. health system. A poignant expression of this, patient advocates said, is the silence around the impact that sickle cell disease has on fertility and the lack of reproductive and sexual health care for the young people living with the complex disease.

                              Woolford’s sickle cell complications have run the gamut. By the time she was 15, her hip joints had become so damaged that she had to have both hips replaced. She depended on frequent blood transfusions to reduce pain episodes and vascular damage, and her liver was failing.

                              “So many complications, infections, hospitalizations, and so by the time I graduated high school, I just felt defeated [and] depressed,” said Woolford, speaking from a hospital bed in Baltimore. She had experienced a sickle cell pain crisis a few days earlier and was receiving pain medication and intravenous fluids.

                              In her late teens, Woolford sought out a bone marrow transplant, a treatment that enables the sickle-shaped cells in the patient’s body to be replaced with healthy cells from a stem cell donor. The procedure comes with risks, and not everyone is eligible. It also relies on finding a compatible donor. But if it works, it can free a person from sickle cell disease forever.

                              Woolford couldn’t find a perfect match, so she enrolled in a clinical trial in which doctors could use a “half-matched” donor. As part of the bone marrow transplant, patients first receive chemotherapy, which can impair or eliminate fertility. Woolford hesitated. After all, her ideal family included six children.

                              When she told her doctor about her worry, his response crushed her: “This doctor, he looked at me, and he was like, ‘Well, I’ll be honest, with all the complications you’ve already had from sickle cell, I don’t know why you’re even worried about this process making you infertile because you’re probably already infertile.’”

                              Even if patients don’t have the transplant, sickle cell disease can damage their bodies in ways that can affect their ability to have children, according to Dr. Leena Nahata, a pediatric endocrinologist at Nationwide Children’s Hospital in Ohio.

                              For women, chronic inflammation and the sickling of blood cells in the ovaries can make getting pregnant harder. For men, sickled blood can jam inside the blood vessels of the penis, causing painful, unwanted erections that last for hours. This condition, called priapism, can damage sexual function and decrease sperm count.

                              And it’s not just the disease. Researchers are evaluating how some widely used treatments may affect fertility — for example, by decreasing sperm count.

                              “It remains unclear how that translates directly to fertility outcomes but at least raises the concern that this may be an issue,” Nahata said. Even more concerning to Nahata were the results of a small study, which she co-authored, that showed some patients were unaware of the many fertility risks related to sickle cell disease.

                              Woolford said she was 19 and shocked when her doctor told her she was probably already infertile. But no one could be sure, so she held out hope that she might still undergo a procedure to preserve her fertility before having the chemotherapy required for the bone marrow transplant.

                              From extensive research, she learned that egg freezing could cost more than $10,000 and that her insurance wouldn’t cover it. She couldn’t afford to do it on her own. Woolford wondered whether she could find another way to pay for egg freezing. “So I started looking into financial resources,” she said. “And I saw all these foundations [that] give away grants. But you had to have a diagnosis of cancer.”

                              In the end, Woolford had the transplant without freezing her eggs. She said she felt that being cured would “be a fair trade-off to give up my dream of biological children.”

                              Unfortunately, the partial-match transplant did not work. Woolford’s body rejected it.

                              “So, here I am,” she said. “I am 30, still have sickle cell disease, and I’m infertile.”

                              A grim thought sometimes pops into Woolford’s mind: If she had cancer instead of sickle cell disease, her dreams of having biological children might still come true.

                              The first description of sickle cell disease in medical literature was published over a century ago. Because most sickle cell patients in the U.S. were Black, it quickly became labeled as a “Black disease.” And with that came a legacy of systemic racism that still affects patients today.

                              Black patients tend to have less social capital and fewer resources, said Dr. Lydia Pecker, a sickle cell disease researcher and an assistant professor of medicine at Johns Hopkins University.

                              Pecker said that for fertility treatment, the resources available to cancer patients differ starkly from those available to sickle cell patients. “There are any number of foundations, large and small, that help support and pay for fertility preservation for people with cancer,” Pecker said. “Those foundations actually work with fertility preservation centers to negotiate lower rates for affected people.”

                              Clear clinical guidelines state that children who have cancer and are going through chemotherapy should be referred for fertility preservation.

                              Children with sickle cell disease going through transplants are exposed to chemotherapy, too, “but we don’t really have guidelines like that yet for people with sickle cell disease,” Pecker said.

                              It’s not a perfect comparison, she added, because the kinds of chemotherapy drugs used in pediatric cancer are different from the chemotherapies used in sickle cell treatment. But fertility preservation can be crucial when there is any risk of treatment-associated fertility impairment, Pecker said. Without clear and widely adopted clinical guidelines, sickle cell patients may not be referred to appropriate care.

                              Pecker said current medical practice forces sickle cell patients to make a difficult choice. “You can have treatment or you can have fertility,” she said. But in cancer care, she said, the thought is: You can have treatment and you can have fertility.

                              In the U.S., health insurance coverage for fertility preservation and treatment is not guaranteed and varies from state to state. Only 12 states have laws that mandate fertility preservation coverage for patients who undergo treatments that could imperil their ability to have biological children — usually referred to as iatrogenic treatments — like chemotherapy or radiation.

                              After Woolford’s transplant failed, the disease continued its assault on her body. And Woolford has had to come to terms with the impossibility of ever having a biological child. She launched a nonprofit, the Sickle Cell Reproductive Health Education Directive, to raise awareness of fertility issues at medical conferences and among patients. A future goal is to provide financial grants to sickle cell patients struggling to pay for fertility preservation and treatments.

                              Most days, Woolford finds the work empowering. On other days, she admitted, it reminds her of the bleak reality that she will probably never conceive a child.

                              “It’s really hard because I don’t think a lot of people realize that I’m fighting for something that I didn’t have access to,” she said.

                              At this point, she said, it’s no longer a medical justice fight. It’s a reproductive justice one.

                              Reporting for this story was supported by the USC Annenberg Center for Health Journalism’s Impact Fund for Reporting on Health Equity and Health Systems. It was produced in partnership with Side Effects Public Media, WFYI, and KHN.

                              This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

                              KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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                              Tags: HealthcareHealthy LivingPublic Health
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