The stories below were collected from our physicians. The patients’ names have been changed.
Some of the stories below show the impact of the Hyde Amendment and its prohibitions on federal funding for abortion. The amendment went into effect in 1976. In seventeen states, women on Medicaid are not subject to Hyde because state money pays for their abortions.
The following stories demonstrate the effects of Hyde on women who receive Medicaid or work for the federal government.
Gail is a 22-year-old U.S. Army private who was raped at a military base in Afghanistan. She became pregnant and wanted an abortion, but military insurance covers termination only if the woman’s life is in danger—rape doesn’t count. Gail had no choice but to come home for the procedure, interrupting her service and her career. I met her at my Rochester office in November.
Although she knew she was pregnant at two weeks gestation, Gail didn’t have her abortion for another 12 weeks. She faced “red-tape” delays in coming home plus the difficulty of raising the money for her procedure. Her sole source of financial support was her mother who was living on a fixed, low income.
The man who raped Gail was court-martialed and awaits trial. His punishment is uncertain while hers is all too clear.—Morris Wortman, MD, FACOG
My patient Carol was excited to give birth to her first child. Her husband was a Marine serving in Afghanistan. Sadly, in her second trimester, Carol learned that her baby had a lethal anomaly. She and her husband made the difficult decision to have an abortion.
That’s when they learned that the military health insurance they relied on wouldn’t cover the abortion unless Carol’s life was in danger.
Her husband was outraged. He had just flown back from Afghanistan to be with her, and he angrily asked me, “I’m over there defending my country, and they won’t even take care of my family?”—Nancy Stanwood, MD, MPH
A woman who was 16 weeks pregnant and had an alcohol problem came to me for an abortion. She knew that she was not ready to be a mother. But she had a condition with her placenta that made abortion risky, and I had to tell her that the procedure would require a hospital stay, making it much more expensive.
She didn’t have insurance or enough money to cover the termination. She had no choice but to continue the pregnancy. I got her into prenatal care. That was the best I could do.—Willie Parker, MD, MPH, MSc
One of my patients is 27 years old and single. Sandra has a job but no health insurance. Until a few months ago, she lived with her mother and stepfather. Sandra’s stepfather raped her, multiple times, and she became pregnant.
It took Sandra some time to get enough money together for an abortion. At 11 weeks pregnant, she went to a clinic where she received an ultrasound. The staff determined that she was too far along to have an abortion there, referred her to another clinic and charged her for the ultrasound. Again, Sandra needed time to scrape her money together, her funds depleted by the clinic visit. She arrived at the second clinic 17 weeks pregnant but had missed that clinic’s cut-off, too.
Then Sandra came to my clinic, still frantically seeking an abortion. But now at 23½ weeks, she couldn’t have one through us, either. We asked about reporting her stepfather to the police, but she begged us not to do so for fear of reprisal. Sandra is desperate to keep her pregnancy a secret. Her relatives and surrounding community consider premarital sex to be a crime almost on the level of murder. Regardless of the fact that she was raped, Sandra will be considered unmarriageable if it becomes known that she lost her virginity.
We tried to find a place that could help her, referring Sandra to a clinic in another state. She failed to show up. That was a month ago. I’ve tried to find out what has happened to Sandra, but I get only her voice mail. I worry.—Mildred Hanson, MD
I saw Maria a few months ago when she came to the hospital with an anencephalic pregnancy. Her baby had developed without a brain, and there was no chance it would live past birth. Maria was a 37-year-old single mom working full-time for the U.S. Postal Service and supporting three kids, ages four, seven, and nine. Her doctor discovered the baby’s condition when Maria was 16 weeks pregnant.
She spent the next two weeks trying to convince her insurance company to pay for a surgical abortion, which would cost about $2,000. As a government employee, however, Maria had insurance that would not pay for such a procedure—unless, she was told, she had been raped or the pregnancy posed risks to her health. Maria’s fetus was doomed to die within minutes of birth. In the eyes of the government, her situation wasn’t grave enough to allow an abortion.
It wasn’t until six weeks later that Maria was able to get an abortion at the hospital. She needed that time to gather the money for the procedure and arrange transportation and childcare. The delays she faced increased her risk for complications, putting her health in danger. These circumstances are not unique to Maria. Women all over the United States grapple with such undue burdens every day.—Jennifer Kerns, MD
I recently saw a patient who is 23 years old. Tina has three small children, 15-month-old twins and a four-year-old. She is in a monogamous relationship but does not receive financial support from her partner. She struggles to get by on her salary alone.
Tina was using birth control to prevent another pregnancy, but it failed her, and she is now pregnant again. She is scared this pregnancy will prevent her from working, which would mean no rent money and no food for her children. She felt that abortion was the best option.
Tina is lucky enough to have private health insurance through her employer, but it does not cover abortion. She tried to borrow money from friends to cover the cost of an abortion but couldn’t do so fast enough. Now she is too far along in her pregnancy to terminate it.
Tina is extremely anxious about this impending birth and is not excited to become a mother again. Because her insurance does not cover abortion, she is going to have a child she can’t care for. The situation is bound to create long-term challenges for this young family, setting up Tina for dependence on social welfare and reducing her children’s chances for success in school.
She knew what was best for her family, but her insurance company dictated the terms.—Margaret E. Baylson, MD
Karen is my 25-year-old patient who got pregnant by accident. She had a medication abortion, for which she paid in full because she doesn’t have insurance. The abortion was long and painful, and she didn’t pass all the tissue so the doctor did follow-up surgery.
She came to me because she was still bleeding heavily three weeks later. Karen’s first doctor had done everything right. But instead of shrinking after the termination, Karen’s uterus remained enlarged, and she kept bleeding. Karen was frightened and pale. I thought there was tissue in her uterus and wanted to do another D&C, which requires anesthesia, but she didn’t have the money. Because she was so anemic, I was able to admit her through the emergency room and then give her the D&C. Afterward, I gave her medication and sent her home to take iron.
Karen is looking for a job. She’s well educated and embarrassed not to have insurance. She said her parents’ policy won’t cover her, and she can’t afford insurance until she gets a job. Now she has a hospital bill, too.—Sara Imershein, MD
My patient Sherry is 24, pregnant, and the mother of a 7-month-old son. Although her pregnancy was not planned, Sherry and her husband were initially excited to have a little brother or sister for their boy. Then Sherry’s early ultrasound showed she had twins. She and her husband spent several weeks eagerly anticipating the growth of their family.
But the next ultrasound showed that the twins are conjoined, or Siamese. The babies are joined at the head, sharing a brain, and chest, sharing a heart. They have two spines, four arms, and four legs. It would be impossible to separate them. If they survive after birth, it would only be for a few minutes. One heart can’t keep two bodies alive. The risk of stillbirth is also very high.
Now 19 weeks into her pregnancy, Sherry tells me she is depressed. She wakes up every morning wondering if today will be the day her babies will die inside her. How would she deliver them? She knows that she would probably need a cesarean section because their combined size might make them too large for the birth canal. Sherry then imagines carrying the twins for another four and a half months. She sees herself delivering stillborns or watching her babies die minutes after their birth.
Sherry must decide whether to continue her pregnancy. An abortion might give her and her husband some emotional relief. And if the twins are small enough, she might not need surgery to remove them.
But because Sherry’s insurance will not pay for her abortion, she has to worry about money on top of her other fears. She is on Medicaid, which will cover the twins’ delivery, alive or dead, but not an abortion—fetal abnormality isn’t enough to get around the Hyde amendment. Although the abortion would be less expensive in a clinic, Sherry would have to go to a hospital since she could need surgery. She would be responsible for the entire bill of at least $10,000 to cover the operating room, anesthesia, medication, and other fees. This expense would destroy her family’s financial well-being.
Sherry can carry her babies to term who cannot and will not live, or she can have an abortion and possibly bankrupt her family.
Sherry’s pregnancy is medically rare, but her dilemma about money is all too familiar. When a woman doesn’t have insurance coverage for abortion, she and her family suffer.—Renee E. Mestad, MD
We had a 16-year-old patient at one of our high school-based health centers who had been homeless, with her mom, for a year.
When Gwen became pregnant, she wanted an abortion. We referred her to a clinic, but her insurance didn’t cover it. Gwen could not come up with the minimal fee required. She now has a baby and has dropped out of school.
The three of them—Gwen, her mom, and her baby—are still homeless.—Elizabeth Feldman, MD, FAAFP
Allison had an unplanned pregnancy. She still hadn’t decided whether to continue the pregnancy when her youngest child was diagnosed with leukemia.
Allison and her husband quickly realized that there was no way they could handle having another child at this time. She needed to take a leave from work and stay at the hospital with their four-year-old daughter for the many treatments to come. Her husband would have to stay home—which is two hours from the hospital—to work and care for the two older children.
Although Allison and her husband both work, neither has a job that provides health insurance. Fortunately, Allison qualified for Washington State Medicaid. She was able to obtain her abortion without worrying about the cost and return to caring for her sick four-year-old.
I can’t imagine the hardship Allison and her family would face if they had to pay for the procedure out of pocket. But that is the reality for too many women in this country. Health insurance must meet the needs of patients, and abortion can be no exception.—Deborah Oyer, MD
I met Consuela when she was 20 weeks pregnant. She was admitted to the hospital to rule out preeclampsia, which involves high blood pressure and other symptoms that can cause serious complications for the mother and fetus. Consuela did not have preeclampsia, but during her admission, an ultrasound showed that her fetus was not developing kidneys. Most infants with this problem are born alive but do not live beyond a few hours. The ultrasound also revealed that Consuela’s placenta was covering the opening to her cervix; this condition can result in life-threatening bleeding during delivery and requires a cesarean section.
After a long discussion, Consuela and her husband decided to pursue an abortion. They were insured by Medicaid, and they were stunned when they learned Medicaid would not pay for the procedure. In Colorado, Medicaid covers abortions only if the woman’s life is in danger or if she is a victim of rape or incest.
Consuela’s abortion would cost approximately $4,500 because her health made it necessary for the procedure to be performed at the hospital. Coming up with this large sum was impossible for her and her husband; they were working low-paying jobs and supporting two other children.
Through the Spanish translator, they asked us many questions, such as “Medicaid will cover genetic testing, multiple ultrasounds, prenatal care with the high-risk specialists, and cesarean delivery, but it will not cover this termination? Why do genetic testing and ultrasounds if patients can’t make choices based on their results?” And from Consuela: “Because of my medical conditions, I could develop preeclampsia or hemorrhage with this pregnancy. I am supposed to put myself at risk, have a cesarean, and still my baby will die?”
We tried to find alternate funding for Consuela’s abortion but failed. She continued to carry the pregnancy and suffer tremendous emotional turmoil.
At 26 weeks, she presented with intrauterine growth restriction and a fetal demise. At last, her pregnancy was over.
Consuela and her husband were grateful for our care, but mostly they were thankful that they didn’t have to spend the next three months awaiting labor. Unfortunately, many patients in Consuela’s position are not so lucky.—Kristina Tocce, MD
I wasn’t able to help Anna. She became pregnant unexpectedly and decided to have an abortion. But when I started the paperwork for Anna’s procedure, her insurance coverage was denied. Anna works for the postal service, and as a government employee, she is not allowed to have health insurance coverage for abortion.
I had to tell Anna that I couldn’t provide her abortion, and I gave her the phone numbers of some clinics that could help. In the end, Anna had to borrow money from several friends to pay for her abortion. I will never forget how frightened and frantic she was to learn that her good government health insurance didn’t cover the care she needed.—Pratima Gupta, MD, MPH
Margie is a 28-year-old married woman in North Dakota with a seven-month-old baby. She is pregnant, her husband is unemployed, and they are living with their extended family. They have Medicaid, which in their state covers them for childbirth but not for abortion. Although there are two clinics closer to Margie—one in North Dakota and one in Montana—than ours in Montana, she called us because our website talks of financial help for people unable to pay the full price of an abortion.
We were able to find $250 for Margie in the form of a grant, but she said they can’t afford the remaining $250 for the total cost. We then found a private donor to pay $100, and we will forgive the balance. I called Margie to discuss this, and she said it would take her another week to come up with the $80 they will need for gas to make the round trip of 982 miles to our clinic.
Because of money, Margie has now been delayed at least three weeks. She states very clearly that they can’t afford another baby, as evidenced by their trouble with even paying for an abortion.
Instead of building pain and hardship like Margie’s into health reform, we must treat abortion for what it is: safe, legal medical care that women rely on when faced with an unintended pregnancy. If a woman has to buy health insurance, shouldn’t she be able to buy one plan that meets all of her needs?—Susan Wicklund, MD
A pregnant, 25-year-old nurse working for the Indian Health Service in New Mexico was diagnosed as having a fetus with lethal anomalies, meaning it would live only a few days past birth. Jen decided to end her pregnancy
But, as an employee of the federal government, Jen has health insurance that follows the Hyde amendment’s restrictions on abortion: no coverage except in cases of rape, incest, or a threat to the woman’s life. Carrying a fetus that can’t survive doesn’t count. Likewise, the physicians at the Indian Health Service hospital where Jen worked and had received treatment were prohibited from performing her abortion.
On top of paying for the procedure out of pocket, Jen had to travel 2½ hours to the hospital where I work, leaving behind the doctors she knew and trusted.—Larry Leeman, MD, MPH
I had a patient yesterday who has insurance through her low-wage job at a hospital. Liza is married with two kids, and she relied on pills for birth control. She never missed a dose but became pregnant for the third time anyway: she is in the 1-2% for whom the pill fails. Nevertheless, Liza and her husband wanted to have the baby.
But then Liza’s husband lost both of his jobs. They decided on abortion. At the clinic Liza learned she would have to go to the hospital for the procedure because she is very overweight and had uterine surgery to remove fibroids. She came to see me, and we took care of her in the operating room.
Liza’s abortion cost $10,000—an amount that would have decimated her family’s finances if her insurer had refused to cover it. I see at least two or three women every week who are sent to the hospital for their abortions. These women have serious medical problems exacerbated by pregnancy, complications arising from pregnancy, or fetuses with severe abnormalities. They deserve insurance that covers them in an emergency.—Anne R. Davis, MD, MPH
I am a fertility specialist, and Donna is one of my long-standing patients. She and her husband had run out of money for infertility treatments. But at age 41, Donna finally achieved her dream: pregnancy. Both blood tests and ultrasound showed appropriate growth. She was not interested in further testing as she was so excited just to be pregnant. She felt nothing could go wrong now that she was finally expecting a child.
At about 22 weeks, Donna’s obstetrician was concerned about a lack of fluid around the baby as well as diminished growth. Donna was sure that her baby was fine. At the next visit, Donna’s doctor insisted on further studies. The ultrasound showed anencephaly—in other words, Donna’s fetus was growing without a brain.
Donna was devastated. She was now 26 weeks pregnant. Her obstetrician could not offer her any help except to follow her through the rest of the pregnancy. Donna did not have insurance coverage for an abortion even if she could have had one legally at that stage in our state. Legal late abortions are only available in Pennsylvania if there is a threat to the woman’s health, she has been raped, or she has been the victim of incest.
Donna became severely depressed, unable to work or even get out of bed. Her obstetrician has planned a cesarean section for her due date, as such fetuses do not usually initiate delivery. That procedure Donna’s insurance will cover, that is legal, and that is the best her doctor can offer her. Her trauma has continued as she struggles with the guilt of having an abnormal fetus and the inability to get real help.—Frances Batzer, MD, MBE
Stacey is now 23, though I first met her three years ago. I’m a pediatrician who specializes in adolescent medicine, and some of my patients are in their late teens and early twenties. Stacey came to me because she was losing too much blood during her periods, which was affecting her health and energy level. To control her bleeding, I put her on birth control pills. She had never had sex but had been in a two-year relationship with a young man she met in college. They were beginning to talk about their future, and she was hopeful that they would be engaged soon.
Stacey lost her insurance coverage when she graduated from college because she could no longer be on her parents’ plan. She was the first from her small-town, southern Indiana family to go to college. Stacey was putting herself through graduate school when she came urgently to my office. She needed a new prescription for her birth control and was having irregular periods again. I asked about her relationship. She informed me that her fiancé had become progressively more jealous and controlling, begun preventing her from going to class or seeing her friends, and that she was fearful that his emotional abuse would become physical. Stacey still loved him but had finally realized that she was safer without him and had left him a week before.
Stacey was devastated when I told her that she was six weeks pregnant. It was not rape or incest, and the pregnancy would not threaten her life, but having this baby meant being legally and emotionally bound for the rest of her life to a man that she had just escaped from. She knew she wanted to be a mother but didn’t know if this was the right time and knew her fiancé would not be a good father.
She struggled through her choices for three days, then decided not to continue the pregnancy. Without insurance coverage, she had to borrow money from friends and family to pay for an abortion. I referred her to an obstetrician for termination of her pregnancy and have seen her twice since. She has met with a counselor to help her heal from her abusive relationship. She is happy, healthy, and succeeding in her life and educational goals. A safe, legal, medical abortion protected her fertility for the future.
Stacey is just one of thousands of Indiana women who chose to have an abortion. Each year in Indiana, more than 11,000 women have abortions. Most of these are not cases of rape, incest, or life-threatening pregnancy, but the pregnancies threaten the lives and health of Indiana’s women in countless ways. My patients are moral women, from moral families. They deserve health insurance that meets all of their needs.
While many Hoosier women are pro-life, I have never seen one disapprove of an abortion that was in the best interest of her friend, her mother, her sister, or her daughter.—Rebekah L. Williams, MD, MS
One of my patients, Simone, was looking forward to the birth of her first child. She was devastated to learn that an ultrasound had shown multiple severe malformations. Simone and her husband decided on abortion.
However, she also had a placental problem that put her at high risk of hemorrhage and could require more complicated surgery. For her safety, Simone needed to have her abortion in a hospital operating room rather than a clinic.
Simone lives in Oregon, where our state Medicaid program covers abortion services. Most women in this country aren’t so lucky. They have to find the money to pay in full for a complicated abortion—a devastating blow to a family already reeling from bad news about their baby.—Regina Renner, MD, MPH
In 2008, I saw Dana, a pregnant 21-year-old from the East Side of Buffalo. She was engaged to a fellow college student at Buffalo State. Dana had no insurance because she and her family had simply forgotten that the parents’ policy would drop her on her 21st birthday.
The pregnancy was a tragic epiphany for Dana. Her fiance was unwilling to let the pregnancy change his career plans and left for graduate school in another state. Her father was laid off in the 2008 economic downturn, and her parents started to suffer financially.
Dana came to me for an abortion. The fee was higher than she could pay right then, so she left to scrape together the money. She failed.
Dana dropped out of college. She heard she could get a less expensive abortion in a neighboring state, then felt the quality of care at that clinic was below standard. Because of these delays, she was now too far along in her pregnancy to have an abortion.
Dana delivered a healthy child in August 2008. She has not returned to school and is living with her parents. Her career goals are on permanent hold.
Dana told me that she is embarrassed by her poor decisions. But it is our health insurance system that made their repercussions far worse. If Dana could have counted on insurance with abortion coverage, she would not have been forced to be a single mother and abandon her college education. I can only hope she will prove to be a wonderful parent.—Thomas Rosenthal, MD
Last month I saw a woman at our neighborhood health center for a follow-up after an abortion she had at a local abortion clinic. Her husband lost his job, and she was the only breadwinner in the family. Her job did not provide health benefits. She terminated the pregnancy because she could not afford to raise another child in her financial state. She was completely guilt-ridden over her decision.
Not wanting to get pregnant again, she vowed never to have sex again. She was adamant. I tried to reason with her that that is not usually a plan that works well long-term. She has medical conditions that preclude the use of hormonal contraception. The best option for her was an IUD. She agreed but had not been able to afford the cost of the device or the placement.
There is a program for low-income women, but she hadn’t qualified the three previous times she applied. She cried as she told me how unfair it was. She said that her niece on public assistance has no job but was able to get the IUD without question. It is time for reproductive health care—and health care in general—to be available to all.—Thomas deHoop, MD
My patient has an unplanned pregnancy because her insurance doesn’t cover any birth control. She could have afforded to pay for the pill out of pocket, but she takes a seizure medication that makes hormonal birth control less effective. What she needed was an IUD, which would have given her far better protection. The IUD and its insertion cost anywhere from $600 to $1,000. She couldn’t afford it.
My patient’s seizure medication causes birth defects. She was more than a month along when she learned she was pregnant. Her insurance company will pay for the long-term care of a child born with severe health problems but not for birth control.
Now she has decided to have an abortion. Her insurer won’t pay for that, either.—Willie Parker, MD, MPH, MSc
Molly is a 28-year-old, uninsured mother of two children, ages six and four. She is married to an abusive partner and became pregnant. She sought an abortion at 10-11 weeks without her partner’s knowledge. Molly worked part-time as a waitress and was ready to pay cash—approximately $450—for the early procedure to be done that day.
But because of Wisconsin’s mandatory 24-hour waiting rule, she received an appointment a few days later to accommodate both the law and her work schedule. Her partner found out her plans, beat her up, and, Molly said, threatened to “kill me.”
Molly cancelled her abortion. She scheduled her obstetric care and ended up delivering early at 33 weeks with the baby in the neonatal intensive care unit for six days at a cost of more than $18,000.
Not only did her lack of insurance produce a crippling debt for Molly’s family, but it kept her from getting regular check-ups before her pregnancy. If she had had affordable health insurance that covered women’s basic health needs, those check-ups would have included contraception counseling and domestic violence screening. With her physician’s help, Molly might have avoided her unplanned pregnancy. She might have even found a way to stop her partner’s abuse and make a better life for herself and her children. Instead, Molly suffered immeasurably.—Douglas Laube, MD, MEd
Christine came to see me for an IUD. She is 40 and had been pregnant recently. She and her husband have two children, and they wanted to have another baby.
But Christine’s insurance doesn’t pay for labor and delivery. Her doctor estimated that even an uncomplicated birth would cost thousands more than she and her husband could afford. And their income was too high for Medicaid.
So instead of having the third child she and her husband wanted, Christine had an abortion, for which she paid in full because her insurance didn’t cover that, either. The final insult? Christine wanted to make sure she wouldn’t become pregnant but her insurance wouldn’t cover her IUD.—Anne R. Davis, MD, MPH
I was talking to a patient during her procedure. She’s a single mom of two, having an abortion and wanting an IUD as more reliable birth control, but she can’t afford it. She doesn’t have Medicaid because she’s employed. But her job doesn’t give her health insurance yet. She is a manager at McDonalds, and she’s been there for seven years. She can’t get health insurance until she has been there for ten years.—Linda Prine, MD
Melinda came to see me just before she lost her job and her insurance. She had large fibroids—benign tumors—in her uterus that made her bleed heavily. I prescribed birth control pills, which controlled the bleeding. Then, as sometimes happens with fibroids, the pills stopped working.
Melinda bled so heavily she was dizzy and unable to walk. After seven hours of bleeding, she called our office, and we advised her to get to the emergency room immediately. She was in shock; the ER staff gave her a blood transfusion that saved her life.
The next step in her care would be an operation to remove the fibroids. But once Melinda was stable, the doctors discharged her. Hospitals are required to try to keep every patient alive, but they don’t have to provide nonemergency care to people who can’t pay.
The staff advised Melinda to apply for Medicaid and schedule the fibroid operation once she was covered. But because she receives unemployment benefits, Medicaid deemed her too wealthy for assistance.
I am trying to work around the system to get her the operation. It is far more likely that her bleeding will return and put her back in the ER for another close call.—Anne R. Davis, MD, MPH
Lori is a 52-year-old woman with no children. She’s taking college classes. Her husband works at an art and frame store. They have no insurance. I first saw Lori in January. She gave a three-month history of excessive vaginal bleeding, fatigue, and feeling faint. I figured that she probably had small fibroids, but considering her age I wanted to be sure she didn’t have cancer of the uterus. She had never had a mammogram.
I tested Lori for anemia and laid out a plan for a sonogram and a uterine biopsy. Her blood test showed severe anemia—she had slowly lost almost half of her blood. I called her in and gave her samples of a high-dose iron supplement. I asked her to get the sonogram and return for the biopsy.
But I didn’t see Lori again until last week—seven months after I’d given her the iron supplements. Her husband brought her in, and she was pale and weak. She couldn’t walk without assistance or stand for more than a few minutes. Her heart was racing. I knew right away she was profoundly anemic.
She hadn’t done any of the tests and had run out of the iron supplements. She needed a blood transfusion, an evaluation of her uterus, and maybe surgery. I don’t have equipment for acute medical care. We insisted that her husband take her to the ER. She protested that they could not afford it. I could only tell her that I had nothing in my office to give her to make her feel better. We convinced her to go to the ER. I know that if she had insurance, she would never have been so sick.
The ER will stabilize her but won’t treat the cause of her bleeding because it doesn’t qualify as emergency care. Now when she gets her hospital bill, she’ll be both poor and sick. Not a good prognosis.—Sara Imershein, MD
I was called to the emergency room to see a new patient in her 40s who had heavy vaginal bleeding, anemia, and a possible blood clot in her leg. Harriet had been seen at a nearby hospital about a year before for her routine Pap, which was abnormal. A biopsy showed early cancer of the cervix, and she was scheduled for a simple outpatient surgery, a cone biopsy of the cervix, which almost always cures this kind of early cancer.
Harriet told me that she arrived on the morning of the procedure to learn that she couldn’t have the surgery unless she paid the co-pay, which her insurance didn’t cover up front. She didn’t have the money and walked away without having the procedure.
When Harriet came to our emergency room about a year later, the cancer had become invasive. Over the next two years she had several radiation treatments, a D&C, and several hospitalizations. In the end, she died of renal failure and bowel obstruction from the extensive growth of the cancer—a very painful death.—Jan Werbinski, MD
I work one day a week at our county’s public health department. There I met Sue, a 31-year-old woman who came in with pelvic pain and bleeding. She proved to have extremely aggressive cervical cancer that was stage IV when I diagnosed it.
When Sue was 18, she had a tubal ligation after she gave birth to her only child. As a single mom, she did not have the financial resources to have more children. She concentrated on raising her daughter.
Sue always worked, sometimes two jobs at once, but never the kind of job that offered health insurance. But because she’d had a tubal ligation, she did not qualify for our state’s Family Planning Expansion Project that provides free annual exams, Pap smears, and contraceptive services to many of our clients.
Cervical cancer is an entirely preventable disease. Pap smears almost always find it in its pre-invasive form. But Sue never came in for a Pap smear or an annual exam. Her lack of affordable access to basic health care proved fatal. When Sue died of cervical cancer, her daughter was 13.—Linda Harris, MD
Note: Senator Jeff Merkley read this story on the Senate floor. He was speaking in support of the Mikulski amendment to the Senate’s health reform bill, which would require insurers to cover women’s preventive health care. Read his speech.
I work as a physician consultant to a statewide legal services organization in Pennsylvania. A young woman named Shannon with advanced stage IV cervical cancer had no health insurance but was able to obtain insurance through Medicaid’s Breast and Cervical Cancer Prevention and Treatment Program (BCCPTP). She has done amazingly well, particularly given that her cancer had metastasized to the liver.
Now that Shannon is a success story, she can no longer get health care. To be eligible for BCCPTP, one must require active treatment for cancer. Shannon asked to continue her BCCPTP benefits because her physician believes she has metastatic disease even if it is clinically undetectable at the moment. The state of Pennsylvania denied her request because she does not now have a demonstrable disease and the program does not cover “surveillance.”
Shannon has appealed the decision with the support of her doctor—Gene Bishop, MD
Last year, I treated a woman with cervical cancer. She was very sick and had no insurance. I remember she had no visitors, even though it was Thanksgiving weekend. She had never had a Pap smear, so by the time her cervical cancer was detected, it had metastasized.
She was still fairly young—in her 50s—but was dying in a hospital because she didn’t get medical care.—Michelle Shuff, MPH, fourth-year medical student
I gave Maureen her first pelvic exam ever. She was 29 and the mother of four. I found a large growth on her cervix that was almost certainly cancer, yet I could not do a biopsy or otherwise continue her treatment because she could not pay for it.
Maureen had no insurance and little money. Like many of my fellow doctors in situations like this, I tried desperately to find funding for her. I came up empty. I ended up feeling I had done something immoral by telling Maureen about a potentially deadly medical problem she could do nothing about.—Willie Parker, MD, MPH, MSc
In my last year of residency, I cared for a mother of two who had been treated for cervical cancer when she was 23. At that time, she was covered by her husband’s insurance, but it was an abusive relationship, and she lost her health insurance when they divorced.
For the next five years, she had no health insurance and never received follow-up care (which would have revealed that her cancer had returned). She eventually remarried and regained health insurance, but by the time she came back to see me, her cancer had spread.
She had two children from her previous marriage—her driving motivation during her last rounds of palliative care was to survive long enough to ensure that her abusive ex-husband wouldn’t gain custody of her kids after her death. She succeeded. She was 28 when she died.—William Leininger, MD
Note: Senator Dianne Feinstein read this story on the Senate floor. She was speaking in support of the Mikulski amendment to the Senate’s health reform bill, which would require insurers to cover women’s preventive health care. Read her speech.
Celia had been my patient for 20 years. She was self-employed with a family business—a bakery in her home that she ran with her mom and grandmom in East Haven. Celia was a real community activist who worried about everyone more than herself. Every holiday she gave away bread and other baked goods to less fortunate.
Celia, her mom, and grandmom couldn’t afford private insurance and weren’t eligible for Medicaid because they owned their home. I did Celia’s yearly gynecological exams for free to help the cause. But she never got a mammogram due to the cost.
At age 50, Celia broke her arm in a fall. Her doctors found that her bone had been weakened by breast cancer that had spread widely through her body.
After six months of applications and an interview, Celia finally received Medicaid. But it was too late—she needed to have had affordable health care long before. Celia died at age 52 in horrible pain. She deserved better than that.—Susan Richman, MD, MPH
My patient Barbara is 30 and married. She and her husband were using condoms, but she became pregnant anyway. They decided to have the child.
Barbara was working three part-time jobs—including running her own hair salon—but had no medical insurance. After she discovered she was pregnant, Barbara began having cramps and some bleeding. Worried, she came to see me. I examined her and explained that she showed signs of either a potential miscarriage or an ectopic pregnancy (the fertilized egg attaches to the fallopian tube rather than the uterus and can eventually cause the tube to rupture).
To differentiate between the two diagnoses, Barbara would need serial blood pregnancy tests and ultrasounds. If an ectopic pregnancy is discovered early, a woman can be treated without costly and painful surgery. I explained to Barbara that an ectopic pregnancy can be dangerous, even fatal, if it is allowed to develop unchecked.
But Barbara refused to have any tests, gambling on the possibility that she would miscarry without needing medical intervention. She was hoping for the best, because, without medical insurance, she could not afford what I recommended.
For about three weeks, Barbara and I kept in touch, and she appeared stable. Then suddenly she ended up in the ER with massive internal bleeding due to a ruptured ectopic pregnancy. She had to have surgery immediately. The operation and hospitalization cost much more than she and her husband had. She has filed for bankruptcy and lost her salon. Barbara and her husband probably won’t ever fully recover economically.
Illness weakens families, businesses, and our economy. We must give everyone in this country a better chance at staying healthy and strong.—Emily Fine, MD
Maria is a 30-year-old mother of one who came to my clinic after a positive pregnancy test. She and her husband Todd were very excited about the pregnancy, especially because Maria had a miscarriage the year before.
But we were unable to see anything on Maria’s ultrasound. I was concerned that she had an ectopic pregnancy—a potentially deadly condition in which the fertilized egg attaches to the fallopian tube instead of the uterus and continues to grow. I counseled Maria to go to our local hospital for another ultrasound and blood tests. I also told her that she must go to the ER if she was having any pain.
Maria returned to our clinic three days later in extreme pain. She had not gone to the hospital for the tests. I performed another ultrasound. Maria’s fallopian tube had ruptured due to an ectopic pregnancy. We brought her to the operating room where she was found to be bleeding internally with dangerously low blood pressure.
After the surgery, I went to see Todd, who was visibly shaken by the turn of events. He explained that they had not gone for the tests three days earlier and had not gone to the emergency room the night before because they could not afford it. They were still paying the $11,000 bill from the ER visit, surgery, and hospital stay Maria needed after her miscarriage.
Although both had full-time jobs, Maria and Todd did not have insurance. Most of their “extra” income had been going to pay off Maria’s miscarriage treatment. Despite her terrible pain, she and Todd avoided the medical care she needed for fear of another huge debt and years of payments.—Jennifer Unger, MD