Henrietta Lacks in Haiti – Tackling the epidemic of cervical cancer

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For those of you who may not have heard of Henrietta Lacks, allow me to provide a short tutorial of her immortal importance after her death. Ms Lacks died of an aggressive form of cervical cancer in 1951 at the age of 31. During this same time, researchers at Johns Hopkins Hospital in Baltimore were attempting to grow tissue cultures from human cells. Most of these cell lines died within a few days, but the tissue obtained from Ms Lacks tumor reproduced at a high rate and could be kept alive to allow for further study. The cell line became known as HeLa and was instrumental in developing the polio vaccine 3 years later as well as other breakthroughs in medical science. We now understand that the reason that her cells reproduced so rapidly, and also why she suffered from such an aggressive form of cervical cancer at a young age, is that her cells were infected with a high risk strand of HPV (human papilloma virus) which caused uncontrolled growth of infected cells. This understanding has led to the Gardasil vaccine as well as more sophisticated HPV testing, both of which have the ability to eradicate cervical cancer from the globe.

Cervical cancer is becoming strikingly more important from a global health perspective for two reasons:  Maternal mortality has been reduced by almost 50% and HIV infected woman are living longer on retroviral medication. Unlike Henrietta Lacks, most women don’t die of cervical cancer until their 40’s to 50’s. Keeping more women alive in childbirth means that there will be a larger contingent of women susceptible to the effects of HPV. Women living with HIV, although appearing healthy when taking daily retroviral medication, have a depressed immune system and are more likely to develop cervical cancer when exposed to HPV.  Currently, 85% of world-wide deaths due to cervical cancer occur in the low and middle income countries.

During my 25 years of practice in the US I have encountered 4 cases of cervical cancer. Each of those cases occurred in a woman who had not had a pap smear or pelvic exam in more than 10 years. More than 50% of cases of cervical cancer in the US are not due to the inadequacy of screening but rather to the lack of screening. With the recent addition of HPV testing to pap smears, the accuracy of this test has improved even further. My   work in Haiti has revealed a much different picture. In 15 trips over the past 10 years, I have diagnosed 12 cases of cervical cancer, all of which were well advanced. By some accounts, Haiti has the highest incidence of cervical cancer in the world with 94 cases per 100,000 women. Cervical cancer is the leading cause of cancer death in Haitian women, with 1500 Haitians succumbing every year. It kills nearly as many women as all other cancers combined. This is in comparison to the US, where cervical cancer accounts for only 3% of female cancer deaths. Keep in mind that cervical cancer is one of the few cancers that we currently have the ability to not only prevent but also to treat pre-cancerous lesions before they progress to cancer. Cervical cancer can become a forgotten disease in 25 years.

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On the same evening that Henrietta Lacks premiered as an Oprah movie on HBO, I boarded a flight to Port au Prince, Haiti to participate in a conference addressing the need for a cervical cancer screening program in a country with low resources. Members of the Ministry of Health, Haitian ob/gyns and American aide groups came together to discuss and formulate a future plan. We discussed what works and what doesn’t work, the need for education in the community and how best to use limited resources to benefit the majority of women. Haiti sans Cervical Cancer has a tremendous amount of work to accomplish, but is stronger when everyone is pulling in the same direction.

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Partners in Health, known as Zamni Lasante in Haiti, is part of our coalition of Haitian organizations that has approached seemingly insurmountable world-wide public health challenges in the past. They were pioneers in improving tuberculosis treatment when multi-drug resistance to the disease became problematic and were instrumental in bringing HIV medications to poor people suffering from the disease. In both of those cases, the “experts” said it couldn’t be done but PIH proved them wrong. Cervical cancer is an equally deadly disease, killing mothers in the prime of their lives. The solution, however, is much less expensive – receiving 2 doses of the Gardasil vaccine as a young teenager and then a $10 HPV test every 5 years starting in your mid 20s until mid 50’s. By reducing the rate of maternal mortality by 50%, we have been successful keeping many more women alive during childbirth – now we need to tackle the disease that can kill these women later in life.

Dear Kellyanne Conway – This is what feminism looks like

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Ms Conway spoke at the CPAC convention last week on the contemporary definition of feminism as anti-male and pro-abortion. I consider myself a feminist and don’t identify with either of these definitions. I heard about her commentary as I was driving between appointments and reflected on my “feminist” activities on the same day as she was speaking at the convention. Following is the run-down of what a feminist does on her day off from her usual job as a physician serving women – the ultimate feminist job.

  1. Awake at 6 am to make breakfast for daughters as they head out to high school.
  2. Text with 26 year old son about upcoming interview for nursing school.
  3. Spend 2 hours on Haiti non-profit, Helping Haiti Work, that grants microloans to women and operates a sewing center that constructs reusable menstrual pads for sale in the community. Women that participate in this program are empowered to be leaders in their families and communities.
  4. Volunteer at a local public elementary school tutoring first graders in reading and math. 90% of the students in this school are children of color. The teachers are dedicated and constantly working to involve each child in the curriculum.
  5. Grocery shopping for the week. My husband and I split this task, but he often does more than 50%. Arrive home and start dinner in crockpot for husband and daughters as we will be eating at different times. I cook because I love to and not because I am the mother. Husband also does his share of meal prep.
  6. Drive across town to the MN legislature. I have volunteered to speak before the Health and Human Services Committee in opposition to 2 bills that are being introduced to restrict access to abortion. I am NOT pro-abortion, but rather pro-choice and pro-contraception. Along with many of my colleagues, I feel that government should stay out of the room when a physician is counseling a patient.
  7. Attend a year-end meeting of our independent medical clinic, one of the few non-hospital owned clinics left in our area. I am a board member of this clinic and up for re-election so give a 5 minute speech about the value of independence and what measures we need to take in the future to stay that way. My value as a board member is based on experience, working hard and ability to appreciate other’s opinions. Being the only female board member is a responsibility I do not take lightly.
  8. Head back to St Paul to attend a visit to an Eastern Orthodox church, arranged thru Tapestry, an interfaith group of women that works to break down religious and cultural barriers thru education and service. I am proud to be one of the 3 founders of this growing organization but saddened to know that our existence is needed now more than ever. It was interesting to hear the stories behind the iconography that is so much a part of the Eastern Orthodox religion, but also to reflect on the similarities between the Jewish faith and to view the women in the pictures as wearing the traditional head coverings or hijab. During the social hour following the church tour, I lamented with my Muslim friends about the difficulties of encouraging our teens to stay involved in their respective religions. We found that we shared many of the same difficulties as well as joys.
  9. Arrived home around 9:30 and discussed husband’s experience at local town hall political meeting that was attended by 1000 constituents but not our legislator. We made plans for future involvement in politics and discussed our shared values with our daughters.
  10. Crawled into bed around 11 pm as I had an early morning surgery and clinic the next day. This is where the real feminist is unleashed – advocating for free birth control, vaccinations, knowledge about our bodies and how they work and access to health care as a human right and not a privilege.

Feminism is the right to be treated as an equal human being and to be able to make our own choices. That is not anti-male or pro-abortion. That is human decency and what I teach both my sons and my daughters.

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Breast Feeding, Jade Eggs and the Gspot

This post combines two of my favorite topics: international mission work and working to dispel rumors. You may wonder how the topics above have any relationship to each other. Stay with me for a few paragraphs and I think you will better understand.

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When we are in Haiti for a medical mission week we try to listen as well as teach. This trip we became aware of the tendency for Haitian women to quit breast-feeding their children after 1-2 months so that their breasts can retain their “sexy” look. Powdered milk is now more available but still expensive. Thus, women use the powdered milk as a substitute for breast milk and dilute the milk to make it last longer. Water in Haiti is often contaminated with bacteria, leading to an increase in diarrhea diseases in children. Diarrhea in combination with poor nutrition from diluted milk causes chronic malnutrition. Parents aren’t able to purchase the medications or medical care and frequently abandon these malnourished children in orphanages. An entire cascade of problems that all started with a “sexy breast”.

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Another story. Gwyneth Paltrow recently advocated the use of jade eggs for women to stick inside their vaginas to maximize their “feminine appeal” while increasing vaginal muscle tone and orgasms. Not coincidentally, she sold the jade eggs on her website for a mere $66!  The tragic part of this story is not that Gwyneth purports pseudoscience on her lifestyle website. The internet is full of more inaccurate medical theories than accurate. The crazy part is that the jade eggs sold out!! Women were willing to put their health at risk for a ridiculous theory that was backed by an attractive Hollywood star with no medical background. The benefit of this monetary and health risk was to improve their attractiveness to men. Are you starting to understand where I might be heading on this topic?

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Third story. A patient in our clinic this past month had been paying to have Gspot amplification done in a clinic that advertises cosmetic gynecological procedures, such as labiaplasty and vaginal rejuvenation. Gspot amplification is a procedure that has no medical evidence to support it and is advertised as a procedure that needs to be continuously repeated. The benefit is that it improves vaginal tightness and restores appearance and function. Appearance and function for whom? Do you finally get it?

Women in Haiti and the US are not so very different. Each are willing to sacrifice their health, the health of their children and their money to appeal more sexual to men. Equally at fault are the men who help to perpetuate these myths for their own benefit. I don’t think you would see many men paying $66 for a jade egg to put in their rectum so that they would appear more masculine to women. Men wouldn’t allow an injection in their private parts to restore appearance and sexual function. Heck – they won’t even agree to a vasectomy after their partners have pushed out 2-3 basketball sized infants thru their vaginas. Vaginas that now need jade eggs and Gspot amplification to become restored. Sure hope that Gwyneth has a second shipment of those jade eggs arriving soon from Asia.

The American Welcome Mat Has Been Pulled

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Our country is deeply divided on many issues, the most recent concerning immigrants from Muslim countries. I find it disturbing that the wealthiest country in the world is shutting the door on those that are the most marginalized and in need of our grace and acceptance. Arguing with those who don’t believe as I do doesn’t work. But sometimes personal stories cause others to stop and consider how we may appear to the rest of the world.

I have felt more acceptance and a welcoming spirit during my travels abroad than I have felt from my own neighbors here in Minnesota. During a recent trip to China, our guide became lost during a 6 hour trek thru terraced rice fields. When asking directions of a young man on the path, he offered to show us the shortcut to our final destination. He saw that we were wet and cold and had us stop by his house so that his elderly grandmother could fix us hot tea and serve us oranges. Three hours later we arrived safely at our destination and he waved at us as he turned and walked back home.

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I have been welcomed into humble Haitian homes and served a Coke, knowing that the family may have skipped a meal in order to purchase the beverages.

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When we traveled to Kenya as part of a medical mission trip, my group was hosted and feted almost every night for hours at a stretch.

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Tapestry, a movement I co-founded to increase interfaith dialogue and acceptance, has been welcomed into Muslim, Jewish and Christian places of worship in the Mpls area. Unfortunately, it has been the Christian places of worship that have expressed more reservations when it comes to accepting the beliefs of another religion. In an attempt to spread the wonderful work that we are accomplishing, I have spoken to representatives of churches outside the metro area about hosting similar gatherings in their communities. I have not been successful in receiving a single invite. Those Christian communities who follow the same teachings of Jesus that I do – welcoming the poor, oppressed and marginalized – won’t let anyone cross their threshold who doesn’t “accept Jesus as their Lord and Savior”, to quote one person that I spoke with. And yet we Christians have been warmly welcomed and hosted by both a synagogue and a mosque.

Even Pope Francis has spoken out on the treatment of refugees by Christians. “It’s hypocrisy to call yourself a Christian and chase away a refugee or someone seeking help, someone who is hungry or thirsty, toss out someone who is in need of my help,” he said. “If I say I am Christian, but do these things, I’m a hypocrite.”

One final story about why America is already great. This picture depicts a Chinese American girl born in China, a girl whose father was born in Ecuador and a girl whose mother has survived breast cancer twice due to medical research in the US. These girls used their time last weekend to help pack reusable menstrual pad kits for less fortunate girls in Haiti. What are you doing to keep this country great? Are you reaching out to those who are less fortunate with a helping hand? Or are you supporting the America First Agenda where those who have much refuse to share with others. img_1551

The Paradoxes of Haiti

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My first week back after a medical mission trip to Haiti presents many difficulties – some physical (I won’t expand on the topic of GI issues after eating rice, beans and potatoes every day for a week) but most psychological. At 10 am on Sunday I was enjoying the feel of sand between my toes and salt water on my ankles as I walked down the beach, knowing that 12 hours later I would be arriving to Minnesota and freezing temps. That is the uncomplicated part of the transition. The psychological transition is still a part that I struggle with and sometimes do better than other times. Following are just a few of the thoughts that have created a wrestling match in my head this week.

  1. We were able to prevent a woman from dying due to a bad infection in her foot by amputating her lower leg. She has very poorly controlled diabetes due to poverty, low IQ, and lack of resources for adequate administration of insulin. One of the last patients  I saw before I left for Haiti also has poorly controlled diabetes – due to lack of motivation to check her blood sugars and take medication, both of which are provided thru her insurance.
  2. Maternity was very busy the week we were in Haiti and our nursing volunteers spent many hours working with Haitian staff to improve breast-feeding and care of patients in labor. It is much easier to teach the mechanics of nursing care than it is to teach respectful care. Slapping and yelling at patients during labor is all too commonplace.
  3. Cervical cancer continues to be a preventable disease that kills all to many mothers, disrupting their families. We screened 67 patients for cervical cancer, treated 10 pre-cancerous lesions and diagnosed 1 locally advanced cancer that is untreatable and will be the cause of death in this woman within the next year. A combination of low-cost screening and vaccination with Gardasil has the potential to completely eliminate this cancer throughout the world. Due to unfounded fears of vaccines in this country, only 40% of young girls and boys are vaccinated with Gardasil.
  4. Motorcycles are the primary mode of transportation in Haiti. We treated 3 victims of moto accidents, one a  16-year-old girl who will have permanent scarring on her leg that impedes her ability to walk in the future. Once their wounds were cleaned, stitched and dressed, we sent them home on a motorcycle
  5. Most of the hysterectomies that we perform are due to fibroids (benign tumors of the uterus) and heavy menses. One of the patients that we saw was 41 years old and had not been able to conceive a pregnancy. She was severely anemic but her husband decided that they would pray to God for a miracle child rather than allowing her to have surgery. Another woman looked 8 months pregnant due to her enlarged uterus and her hemoglobin was 3 (normal is 12-15). She was in danger of bleeding to death with her next period. In the US, she would have received 4 units of blood before surgery. She received one unit of blood that was donated by a relative and infused during her surgery. She was also unhappy as she has only one child.
  6. A young man presented to clinic with a large abscess on his arm. His HIV test was positive, as was his syphilis test. He did not believe the results and declined government-funded HIV meds or antibiotics. We could not operate on him as he was at high risk of complications with active HIV.

When co-workers see me this week they often ask, “How was Haiti?”. Trying to find the words to describe the above and more can be difficult, if not impossible,  in a few minute passing conversation.  Do others really want to hear the confusion in my head or do they want to hear that we performed 49 surgeries, 67 cervical cancer screenings and 104 dental exams?  To say “Great job and thank you for what you do” and then move on. But what we do in one week is not enough. And that is the Paradox of Haiti.

When being a same-sex couple in Haiti can be easier than in the US

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I was introduced to Jenn Schenk and Amy Syres a year ago when a friend led me on a tour of Haitian NGOs that are working to help Haitians help themselves. This can often be the more difficult way of helping and requires the ability to put self aside and allow the Haitians to support each other. I was given a tour of the building site of Second Mile Haiti and wrote a blog post shortly after I returned. Briefly, Jenn and Amy have turned their original mission of working in orphanages to now preventing children from becoming orphans when they are relinquished by their families due to malnutrition/illness.  The majority of Haitian orphans are not orphans in the sense that they have lost both parents but rather that their caregivers feel that they can no longer care for them due to severe malnutrition. These children and their caregivers are housed during the week while they are slowly re-nourished and the caregivers are empowered by learning about nutrition, agriculture and business opportunities that will support their families. Their program has been very successful with most children leaving after 2-4 weeks with their caregiver and few recurrences of malnutrition. As the program has expanded, they have continued to employ Haitians as nurses, farm workers and carpenters. I have never been more enthusiastic about any other Haitian program – and I have seen many over the past 10 years.

And that is why the recent turn of events has me both sad and angry. Because it is not a hurricane, an earthquake, a flood or any other event of Nature that has otherwise profoundly affected this island nation. This tsunami came from the US.  Amy and Jenn made the decision to marry this summer in a beautiful ceremony beneath the redwoods of California. This commitment to each other and their life’s work did not sit well with many of their donors – evangelical, conservative Christian congregations. They immediately withdrew their support, both financial and emotional. Haitians are more religious than most Americans but their opinion of Amy and Jenn and the work they are doing did not change. They were happy to welcome them back from their honeymoon as they continued to support Haitian children and families, growing vegetables to send home with the children on weekends and purchasing formula and medicines from local stores.

Throughout the fall, these women have worked to build back their base of donors. But due to attention shifting away during the election season and then the attention directed towards hurricane victims, their source of funds to keep the doors open is dwindling and they are in danger of shutting down by early 2017.  I am asking for a call to action for anyone who thinks that individuals can do great work no matter their sexual orientation. We need to provide the support these women need to keep their doors open, educate even more Haitian families about nutrition and keep children out of orphanages. This is a link to their webpage where donations can be made. Please share this with other like-minded individuals and prove to the Haitian community that we care more about the needs of Haiti than we do about the sexual orientation of the aid workers.

The Haitian Birth Plan

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If you asked a pregnant woman in Haiti, or any other third world country, what her birth plan entailed, she would give you a blank look followed by the words, “Get the baby on the outside and let me live”.  American birth plans, as detailed in my previous post, are unimaginable for these women. They have heard of women who have died during childbirth or of babies that are stillborn. Misperceptions about pregnancy and childbirth abound and are passed from mother to daughter. These same misperceptions are also frequently present in the medical community. During our medical mission trips each year, we work with health care providers to educate about contraception, safe pregnancy and labor care. The more difficult teaching involves compassionate and respectful care of women. Haiti is no different from other countries who have a large portion of the population that are extremely poor and a small elite that are educated. Working hard each day as a physician or nurse caring for hordes of patients often leaves minimal emotional energy left for sympathy.

When I was in Haiti this fall, I had the chance to deliver 20  reusable menstrual pad kits that contained the new “high flow” pad to the birth center of Heartline Ministries. The facility is beautiful while also providing whole woman care for pregnant Haitians. Many of the women in their care have conflicting feelings about pregnancy and use the time of prenatal care to better accept their situation as well as provide for improved bonding after birth. Strengthening Haitian families works to prevent children from becoming orphans – a situation that is all too common in Haiti.

You can learn more about Heartline Ministries here. Our  Days for Girls high flow kits were distributed and  met with  favorable ratings, which is not common when you try something new in Haiti. The following video was made by Troy and Tara Livesay, directors of Heartline Ministries, depicting the birthing experience for a Haitian woman at their center.