Sylvester Cancer Support Services Grow – InventUM – University of Miami

By: Alan Gomez | November 14, 2023 | 6 min. read| Share

Sylvester Comprehensive Cancer Center department features seven new specialists and incorporates a range of integrative oncology services and therapies to assist patients and caregivers.

Maria Rueda-Lara, M.D., is used to educating patients.

As the medical director of psycho-oncology for Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine, her goal is to help patients suffering from the physical and emotional toll of cancer. However, she often must overcome hesitance from patients who are unfamiliar with mental health therapy or view it as a sign of weakness.

It is challenging, she said. When we meet a patient, we do a lot of psychoeducation.

After years of educating patients, Sylvesters Cancer Support Services Department includes 38 specialists who help survivors and their caregivers get through a cancer diagnosis and treatment. As each therapist explains to their patients, complementary services are backed by a large and growing body of scientific research.

Sylvesters second annual Cancer Survivorship Symposium incorporated a daylong patient/caregiver conference focused acutely on current research and finding solutions for the challenges many patients face.

Dr. Rueda-Lara knows the impact her work provides firsthand. She is the co-author of a paper published in the International Review of Psychiatry nine years ago that showed how psychiatric and psychological interventions can help hematopoietic stem cell transplant patients who suffer from high levels of depression, post-traumatic stress disorder and other neurocognitive deficits, which can result in shorter survival rates.

In the years since, Dr. Rueda-Lara and other researchers have produced a steady stream of research that echoes those results across all types of cancer patients.

Everything we do is based on science, Dr. Rueda-Lara said.

The success explains why the Cancer Support Services Department continues to expand, adding seven new specialists this year. The department has licensed specialists offering acupuncture, art therapy, exercise physiology, massage therapy, music therapy, spiritual care and yoga. A separate team provides wigs and head coverings. The department also features 26 social workers, patient navigators and clinic assistants who help patients juggle medical appointments, travel and lodging arrangements, finances and therapy sessions.

I know that I work with a team, which was a huge draw that attracted me to this department, said Zili Huma Khan, a psychotherapist who joined the Sylvester team in 2020. We talk about how the patients are doing, who has been attending treatment regularly, how we can best serve each patient. I never feel like Im alone.

When patients are first referred to Lindsey Weaver, a board-certified art therapist, some of them dismiss the idea because they think its arts and crafts or theyre scared of having their art judged. But Weaver assures them these preconceptions are wrong.

Weaver said patients can reveal so much about their inner selves through their art. For instance, she often asks them to draw a volcano. The drawing is then used as a tool for insight and communication, and can reveal certain emotions. If the volcano is spewing out lava, it could suggest a release of emotions. No lava may indicate suppressed emotions.

Weavers art exercises can also be used as treatment. She often encourages patients to use certain materials depending on how theyre feeling. With a patient who is feeling powerless, Weaver often suggests they use pens over watercolors because watercolors are more difficult to control.

With this population, theyre not given many choices. A lot of people are making choices for them, Weaver said. This allows them to feel a little bit in control.

Research demonstrates the benefits of art therapy for cancer patients. Weaver points to a study published in the Journal of Pain and Symptom Management that found cancer patients who participated in a one-hour art therapy session each week experienced significant reductions in eight of nine symptoms on the Edmonton Symptom Assessment Scale. A separate study published in BMC Cancer found that patients who underwent art therapy realized immediate reductions in pain, emotional distress, depression and anxiety.

Claudia Marin points to 3,000 years of proof as evidence that acupuncture works.

The senior acupuncturist at Sylvester said there are two ways to explain acupunctures effectiveness. The Eastern understanding, which originated in China, says the body is lined with pathways carrying a flow of energy known as chi. When that energy is disrupted or destroyed, disease follows. Inserting needles into those pathways helps restore the natural flow.

The Western understanding is that needles tap into the bodys nervous system, improving blood flow and releasing endorphins and serotonin to help manage chronic pain.

The proof that acupuncture works, Marin said, is so overwhelming the World Health Organization has published guidelines since 1999. But Marin uses another barometer. Her schedule is booked solid through January 2024.

We notice a change in mood. It takes the edge off the pain. Theyre sleeping better, she said.

Khan sees a similar pattern play out with her patients. She specializes in dialectical behavior therapy (DBT), which arms patients with tools and skills they can use on their own to better manage their emotions, reduce their stress, and learn to accept their situation by being more mindful and present in each moment.

Its a survival guide to managing life, said Khan, because it empowers patients to tackle mental health obstacles without becoming overly dependent on a therapist.

Studies have long shown that DBT helps people who are contemplating suicide. In recent years, the practice has been extended to cancer survivors, with encouraging results.Sylvester recently opened the Fields Galley Cancer Survivorship Emotional Wellness Clinic for people in people in remission, who sometimes experience more cancer-related mental health issues than they did while in active treatment.

Khan said the studies that demonstrate the positive affect of support services are seen every day by caregivers.

A patient may enter our services feeling distressed about their particular situation but leaves much more emotionally anchored and regulated, she said.

Tags: Cancer Support Services, cancer survivorship, Dr. Maria Rueda-Lara, Sylvester Comprehensive Cancer Center

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Sylvester Cancer Support Services Grow - InventUM - University of Miami

Meet the Providers Aiming to Make Fertility Care More Accessible – Rewire News Group

Jessicas second-trimester abortion was the day of the 2016 presidential election. Earlier that year, she was diagnosed with polycystic ovary syndrome, which was causing her body not to ovulate. Jessicas doctor referred her to a nearby fertility practice in Connecticut, which thankfully took her insurance. After a battery of tests, the medical team triggered her ovulation, then sent her home to try and conceive. Two weeks later, Jessica was pregnant.

Well, that was easy, Jessica thought, and she continued to go to her fertility appointments until she graduated from the practice at about ten weeks pregnant. Then her obstetrician referred her to a maternal-fetal medicine doctor for her 13-week scan and bloodwork. When those tests showed concerning markers for trisomy 21, or Down syndrome, Jessica went back for more testing: a self-read DNA test, which again pointed to trisomy 21, and finally an amniocentesis and another ultrasound. She remembers being at about 15 weeks by the time all the tests were done.

Her doctors counseled her on the wide spectrum of possible prognoses for a fetus with Down syndrome. Then, they told her the abortion ban in Connecticut started at 24 weeks, so she had some time to decide whether she wanted to continue the pregnancy or terminate it.

After the counseling, Jessica and her husband drove home. They pulled the car into the garage, which is when she remembers looking at her husband and saying, I think we have to let him go. The next day she called to schedule an abortion.

Im not saying it was an easy decision, but it was a quick decision, she told me.

Because of the stigma surrounding abortion for Down syndrome across the political spectrum, Jessica wanted me to know that there were other abnormalities with the pregnancy: The fetus had multiple organ and growth problems that are common comorbidities of Down syndrome. One fact that stuck out to Jessica from her counseling was that many fetuses with Down syndrome never make it to term (roughly 25 percent of Down pregnancies spontaneously abort). The thought of waiting to miscarry horrified her.

The procedure was scheduled for November 6 and 7, at Jessicas hospital with her own care team, where it would be covered fully by her insurance, just as her fertility care had been.

I went to the polls, I voted for Hillary, and I went to get seaweed put in my cervix, she said about laminaria used for dilation. Then the next day I woke up, I saw the news [about Trump] and went, Well, I cannot deal with this today.

Then she went to the hospital to finish the two-day abortion procedure.

I always talk about how it was the worst day of my life, she said. But everyone was very compassionate. Everything was arranged for me.

Even so, while her physical recovery was smooth, mentally she was a mess, and is still dealing with grief and trauma seven years later.

Fertility care and abortion care are intimately linked. While abortion care is more stigmatized, marginalized, and criminalized than fertility care, both are difficult to access and impacted by systemic racism and classism. Fertility care, like abortion care, is rarely covered by insurance: the most common barrier to fertility care reported by participants in a 2021 study was insurance coverage. A standard in vitro fertilization (IVF) cycle can cost anywhere between $10,000 and $25,000, which is often paid out of pocket. Genetic testing adds thousands more dollars.

Black and Latinx women, regardless of income, are less likely to access fertility care and, when they do, less likely to have a successful treatment cycle than the rest of the population. Meanwhile, half of abortion seekers live below the federal poverty line and abortion patients are disproportionately Black and Latinx. The central tenet of reproductive justiceto be free to parent, or not, in a time and manner of your choosingis stymied whether you are starting a pregnancy or ending one.

If a person can access fertility care at all, however, they are by definition accessing a kind of early pregnancy care the rest of the population is often denied. Traditional prenatal practices typically wont see patients until eight to 12 weeks of pregnancy. Yet the most common complication of pregnancyearly pregnancy losshappens in that two- to three-month window. Fertility clinics follow patients from conception to that point, then hand them off to an obstetrician, just like Jessicas doctor did.

Dr. Cori Schreiber founded the Pregnancy Early Access Center (PEACE) at the University of Pennsylvania in part to give pregnant people in those first eight to 12 weeks a place to receive care besides the emergency room.

The counseling and technical skills for managing unintended pregnancy and abortion are very similar to whats required for patients who may be concerned about miscarriage or have an early pregnancy loss diagnosis, she said. PEACE fills that gap in early pregnancy care, while also providing abortion care to 24 weeks of pregnancy.

Schreiber said miscarriage is rarely a true emergency in the United States, but the fact that early pregnancy loss is not a life-threatening emergency does not mean patients do not deserve timely care.

While emotionally devastating, Jessicas ease in accessing both fertility and abortion care was shockingly unusual. Dr. Sheila Ramgopal, CEO and medical director of Allegheny Reproductive Health Center in Pittsburgh, wants to change that.

Ramgopals clinic is majority queer people of color led and staffed, and Ramgopal said they are proud to reflect the people they serve. Still, they feel frustrated at the ever-more defensive stance of abortion care after the Supreme Court overturned Roe v. Wade in June 2022.

I think whats so hard is that this could all fucking be different, Ramgopal said. I feel like the movement is always in a defensive position. So, how do we actually become proactive and actually create ways that we can do the work more effectively?

For Ramgopal, part of the answer was to offer fertility care as part of their clinics services. Since 2017, the Allegheny center has offered basic fertility care within their scope of practice: intrauterine and intracervical insemination, basic fertility testing, and ovulation induction. But in 2020, Ramgopal met Traci Keen, the CEO of Mate Fertility, and started discussing how to make IVF a reality at Allegheny. Mate focuses on offering lower-cost fertility care in geographically underserved areas of the country. They also explicitly welcome LGBTQ+ clients, which not all fertility practices do.

Ramgopal thought the match was solid. Allegheny would own the practice and perform the procedures, while Mate would handle hiring and provide access to specialists, training, and quality control services. In exchange, Ramgopal would pay Mate a portion of the proceeds from fertility care on a monthly basis. Ramgopal also plans to partner with Posterity Health to provide additional services for male fertility, an underserved area in fertility care.

Mate Fertility is a young company that has closed multiple successful rounds of venture capital funding. The company has partnered with a clinic in Oklahoma City and two clinics in California, one in San Luis Obispo and one in Fresno. Pittsburgh, where Ramgopals clinic is located, would continue Mates interest in what Keen describes as underserved secondary and tertiary markets for fertility care.

Keen said her company wants to lower the barriers to fertility care for all people. To that end, Mate has been working on partnering with abortion clinics in states that ban abortion, to repurpose their spaces for fertility care. When asked if Mate had any concerns about providing fertility services in states with staggering maternal mortality rates and no access to abortion, Keen said, I think Id be remiss if I didnt say that its concerning just as a human being when youre in the business of getting people pregnant. Mate, however, has no formal plans to help clients access abortion services in the event they need this health care in a state that bans abortion.

We havent encountered any patients who are paying to get pregnant and then wanting to get an abortion, Keen said.

Ramgopal is putting about three-quarters of the clinics savings into opening a full services fertility clinic. They anticipate roughly $2.2 million total, of which about $1.8 million is just for the buildout of the new facility. But finding a new physical space has proven most challenging.

Im trying to find places to lease where they actually are comfortable with leasing to an abortion facility, Ramgopal said. As of late September, they still had not secured a location. When asked if the clinic had a GoFundMe for the new space, Ramgopal directed me to Western Pennsylvania Fund for Choice.

Keen expressed a general lack of concern with the anti-abortion movement insofar as it might impact fertility care.

Its hard to argue pro-life and then not support IVF, Keen said. Yet Risa Cromer, author of Conceiving Christian America: Embryo Adoption and Reproductive Politics, disagrees.

Im not interested in fanning the flames of fear at all, Cromer, who has written for Rewire News Group, said. But there has been clear critique of IVF from the anti-abortion movement since before Roe. Since IVF became non-experimental in 1978, there has been anti-abortion pushback against it. However, Cromer noted that IVF never became a strategic site of anti-abortion political advocacy in the United States.

Cromer also said President Ronald Regans neoliberal administration aligned with reticence from Democrats to regulate fertility services, lest such regulations impact abortion care. Fertility care became deregulated.

Eventually it became politically untouchable, Cromer said. It would remain that way until the advent of human embryonic stem cell research, when the anti-abortion movement put pressure on President George W. Bush to regulate this new field of science.

This looks like it has nothing to do with abortion, Cromer said. But it really does.

While Cromer noted that IVF is not a current target, the internal logics of the anti-abortion movement remain hostile to IVF and fertility care more generally, particularly when it becomes accessible to non-cishet, affluent, nuclear family structures: the precise people Mate and Ramgopal are trying to help.

When Jessica originally contacted me, she wanted to put her last name on the record. But as we spoke, the stigma of an abortion after undergoing fertility treatment, particularly an abortion for Down syndrome, even and especially among her progressive colleagues, worried her.

Ive been told what I did was eugenics, she said.

Cromer tied Jessicas discomfort to the overarching appropriation of disability rights rhetoric by the anti-abortion movement.

There is a deep history of conservative movements appropriating progressive rhetoric to use it for their own political gains, Cromer said.

She highlighted Dagmar Herzogs book Unlearning Eugenics, which shows how the modern anti-abortion movement came to embrace a pro-disability logic in Germany, specifically around Down syndrome. Though with different historical antecedents, disability rights and reproductive rights have also intentionally been made to compete in U.S. politics.

At the end of the day, Jessica neither wanted to opt into parenting a child with complex medical needs, nor undergo the remainder of what was now a high-risk pregnancy.

I still feel funny saying this, Jessica said. But we [pregnant people] matter too.

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Meet the Providers Aiming to Make Fertility Care More Accessible - Rewire News Group