Friday, November 16, 2018

Students shouldn’t take Adderall as a study aid

By Roy Benaroch, MD
Georgia Pediatrician

This article originally appeared on KevinMD.com.

College students work hard, and many are looking for ways to improve their studying and learn more effectively. Getting more sleep and more exercise would probably help, but up to a third are trying ADHD medications to see if pills can give them that extra boost. A small, recent study shows that they’re not getting the effect they’re looking for.

We’re not talking, here, about teens who have ADHD. There’s robust evidence that medical and non-medical therapy helps people with ADHD stay focused, and medication can help them succeed. But what about the far-larger number of college students who don’t have ADHD. Can they benefit from the same medications?
According to a recent study involving 13
healthy college students, Adderall did not
help them study better or learn more.

Researchers at two universities in Rhode Island – a tiny state, but they’ve got 12 colleges overall – picked 13 healthy student volunteers to take tests of their cognitive ability, memory, and other academic measures. They took these tests in a random order on 2 different days. But on one day, they also took the commonly-used ADHD medication Adderall at a nice hefty dose of 30 mg. On the other day, they received placebo. The researchers were then able to compare the differences in their performance.

Some things did change. On Adderall, blood pressure and pulse were higher, as were self-reported positive emotions and energy. However, there were very small effects on actual cognitive or thinking ability, with some small positive and some small negative effects. Working memory – the ability to recall information – was much worse with the medication. Overall, Adderall did not help these college students study better or learn more.

This was a small study, with only 13 subjects. But the results are striking. On college campuses, medications like Adderall are being used both as study aids and as a way to stay up longer and party harder. But they’re not without risks, including depression, psychosis, weight loss, and addiction. These are serious medications, and while they can have a role in helping some people, they ought to be only used when necessary, under medical supervision.  They’re not for everyone, and especially not for most college students looking for a way to improve their grades.

Roy Benaroch is a pediatrician who blogs at the Pediatric Insider. He is also the author of A Guide to Getting the Best Health Care for Your Child and the creator of The Great Courses’ Medical School for Everyone: Grand Rounds Cases.

Wednesday, November 14, 2018

Why You Should Take A Sabbatical (And How to Make the Most of it)

By Sidney Roberts, MD
Lufkin Radiation Oncologist

This article originally appeared on Op-Med Doximity.

Earlier this year, I did something I had wanted to do (and needed to do) for a long time. I took a sabbatical.

I am a cancer doctor and hospice physician. Dealing with death and dying and end of life issues can be exhausting, not just physically, but emotionally and spiritually as well. Even though I love what I do, I was getting burned out. Not every patient is pleasant or easy to work with. Stress happens. We all need a break sometimes.

There are different ways to get away, and how we go about it may depend on where we are in life. During the routine work year, breaks can come in all shapes and sizes, from the afternoon off to a three day weekend or a more substantial week or more off for a vacation. These standard breaks rejuvenate us and help us stay focused when we are back at work.

A sabbatical is something altogether different.

The word sabbatical has at its root what we recognize as Sabbath – rest – which has a deeply spiritual meaning of both rest and worship in Judeo-Christian theology. The idea of an extended rest from work has a long history in the academic setting, where professors are given time off from teaching to travel, write a book, or study. But I never hear of doctors taking a sabbatical.

Doctors need it. Physician burnout is, according to some, is at epidemic levels. Others call it a crisis. Let's just say, burnout among physicians is far too common. The specialty of emergency medicine reportedly has rates of burnout at nearly 60% with many other specialties at 50% or higher. Burnout is basically severe, chronic stress characterized by emotional exhaustion and lack of empathy for patients along with a cynical or negative attitude and a sense that you are spinning your wheels in your career and not getting anywhere. Does that describe any physician(s) you know? I guarantee it does. I didn't want it to describe me.

Why physician burnout exists (and is increasing) is not the subject of this essay. But if you talk to doctors, government bureaucracy, electronic health records, insurance companies, and declining reimbursement despite longer work hours are almost always going to come up.

Doctors need a break. More than just a scheduled afternoon off or periodic vacation. I would argue that at some point in a physician's career – if they want to stay the course for the long haul – they need to take a sabbatical.

What does a sabbatical look like? It depends on the person. My advice for those considering a sabbatical is to keep in mind three key components: time, distance, and purpose.

Time is important in order to distinguish a sabbatical from a vacation. Two weeks, for example, is not long enough to truly get away from work. You spend the first week just beginning to unwind and the second week worrying about the hell you are going to pay when you get back to the office. Four weeks is a minimum for a true sabbatical.

Distance is important as well – certainly physical distance, in that you want to avoid the temptation to check in on work. Get out of town. Out of the country, even. In this digital age, electronic distance is also important. Are you still going to be tied to Facebook? Instagram? Twitter? Or worse, to your electronic health record? Emotional distance is key as well. Let go of the thought that only you can do what you do.

Finally, consider if there are things you've always wanted to do – books to read (or write), goals to accomplish – but you've never had the time to do them. Be creative; think outside the box.

Avoid the temptation simply to travel, where you feel obligated to visit every cathedral and museum from Athens to Zanzibar. A sabbatical is about you. Be careful, though, that you don't set unrealistic goals for your sabbatical, and that you don't come back feeling guilty that you didn't accomplish all that you set out to do. Remember, the definition of sabbatical is rest. Be still. Listen. Be open. Don't just "do"! Find out more about who you are apart from medicine.

Personally, I stayed four weeks in a seminary in Beatenberg, Switzerland where I translated German theologian and martyr Dietrich Bonhoeffer's thought-provoking book on discipleship and read a trio of books by Puritan writer John Owen. But I didn't feel guilty about whether or not I was meeting certain self-imposed goals. After all, a sabbatical is first and foremost about rest.

I am happy to report that I came back from my sabbatical not just refreshed and much less stressed, but more self-aware and ready for many more productive years of practice. Mission accomplished!

Thursday, November 8, 2018

It’s NOT “Just the Flu” — Protect Your Community by Getting a Flu Shot

By C. Leilani Valdes, MD, Victoria
Member, the Texas Medical Association Council on Health Promotion and Be Wise — Immunize Physician Advisory Panel

Several years ago, a previously healthy person with no pre-existing illnesses or conditions died from complications of the flu in my hospital. As a member of the hospital’s infection control committee and chair of pathology, I learned the patient did not get a flu shot.

I’d read studies indicating that regardless of the flu vaccination’s effectiveness in any given year, getting vaccinated is helpful, because the shot either prevents the flu or lessens its severity. I wanted to know if my community’s experience supported this data. I asked infection control staff at our hospital to track patients diagnosed with flu to see if they had been vaccinated. Sure enough, even though we saw a record number of patients in the emergency department that year with the flu, only patients who were NOT vaccinated for flu were admitted to the hospital for more treatment than could be provided in the ER. Bottom line: People who skipped the flu shot were sicker.

I have always been a staunch advocate for vaccinations, but prior to this small study in my facility, I didn’t really focus on the flu shot. After all, I read the reports saying the flu vaccine only matched the prevalent flu strains between 40 percent and 60 percent of the time. However, data gathered in my own community proves vaccination can save people from hospitalization and death. Be healthy: Get a flu shot.

Last flu season was the worst in thirty years by number of flu-related deaths and hospitalizations. A lower-than-normal flu vaccination rate is partly to blame. This conclusion is according to new information released on Oct. 25 by the Centers for Disease Control and Prevention. My worry as a physician is that our community members do not realize they are contributing to the increased severity by choosing not to vaccinate themselves or their families.

  Dr. Valdes gets her flu shot. Courtesy of C. Leilani Valdes.
I hear frequently from people in the community — and, surprisingly, even from health care workers — that they choose not to get vaccinated. “I get the flu anyway,” they say, or “It’s not really that effective,” or “I’m healthy so I don’t need it.”  Whatever the reason, my response is always the same: “You might still get the flu, but if you have been vaccinated, you probably won’t have to go to the hospital or die from it. And by getting vaccinated, you help protect people in our community who are too weak to respond to the vaccine.”

I hope the more people I can convince to do their part and get the shot, the healthier our community will be. Our vaccine choices today will influence the severity of this flu season.

Friday, November 2, 2018

In Search Of Insurance Savings, Consumers Can Get Unwittingly Wedged Into Narrow-Network Plans

By Steven Findlay
Kaiser Health News

This article originally appeared on Kaiser Health News.

As a breast cancer survivor, Donna Catanuchi said she knows she can’t go without health insurance. But her monthly premium of $855 was too high to afford.

“It was my biggest expense and killing me,” said Catanuchi, 58, of Mullica Hill, N.J.

A “navigator” who helps people find coverage through the Affordable Care Act found a solution. But it required Catanuchi, who works part time cleaning offices, to switch to a less comprehensive plan, change doctors, drive farther to her appointments and pay $110 a visit out-of-pocket — or about three times what she was paying for her follow-up cancer care.

She now pays $40 a month for coverage, after she qualified for a substantial government subsidy.

Catanuchi’s switch to a more affordable but restrictive plan reflects a broad trend in insurance plan design over the past few years. The cheaper plans offer far narrower networks of doctors and hospitals and less coverage of out-of-network care. But many consumers are overwhelmed or unaware of the trade-offs they entail, insurance commissioners and policy experts say.

With enrollment for ACA health plans beginning Nov. 1, they worry that consumers too often lack access to clear information about which health plans have “narrow networks” of medical providers or which hospitals and doctors are in or out of an insurer’s network, despite federal rules requiring plans to keep up-to-date directories.

“It’s very frustrating for consumers,” said Betsy Imholz, who represents the advocacy group Consumers Union at the National Association of Insurance Commissioners. “Health plan provider directories are often inaccurate, and doctors are dropping in and out all the time.”

These more restrictive plans expose people to larger out-of-pocket costs, less access to out-of-network specialists and hospitals, and “surprise” medical bills from unforeseen out-of-network care.

More than 14 million people buy health insurance on the individual market — largely through the ACA exchanges, and they will be shopping anew this coming month.

Trend Appears To Be Slowing 

For 2018, 73 percent of plans offered through the exchanges were either health maintenance organizations (HMOs) or exclusive provider organizations (EPOs), up from 54 percent in 2015.

Both have more restrictive networks and offer less out-of-network coverage compared with preferred provider organizations (PPOs), which represented 21 percent of health plans offered through the ACA exchanges in 2018, according to Avalere, a health research firm in Washington, D.C.

PPOs typically provide easier access to out-of-network specialists and facilities, and partial — sometimes even generous — payment for such services.

Measured another way, the number of ACA plans offering any out-of-network coverage declined to 29 percent in 2018 from 58 percent in 2015, according to a recent analysis by the Robert Wood Johnson Foundation.

For example, in California, HMO and EPO enrollment through Covered California, the state’s exchange, grew from 46 percent in 2016 to 70 percent in 2018, officials there said. Over the same period, PPO enrollment declined from 54 percent to 30 percent.

In contrast, PPOs have long been and remain the dominant type of health plan offered by employers nationwide. Forty-nine percent of the 152 million people and their dependents who were covered through work in 2018 were enrolled in a PPO-type plan. Only 16 percent were in HMOs, according to the Kaiser Family Foundation’s annual survey of employment-based health insurance.

The good news for people buying health insurance on their own is that the trend toward narrow networks appears to be slowing.

“When premiums shot up over the past few years, insurers shifted to more restrictive plans with smaller provider networks to try and lower costs and premiums,” said Chris Sloan, a director at Avalere. “With premium increases slowing, at least for now, that could stabilize.”

Some research supports this prediction. Daniel Polsky, a health economist at the University of Pennsylvania, found that the number of ACA plans nationwide with narrow physician networks declined from 25 percent in 2016 to 21 percent in 2017.

Polsky is completing an analysis of 2018 plans and expects the percent of narrow network plans to remain “relatively constant” for this year and into 2019.

“Fewer insurers are exiting the marketplace, and there’s less churn in the plans being offered,” said Polsky. “That’s good news for consumers.”

Insurers may still be contracting with fewer hospitals, however, to constrain costs in that expensive arena of care, according to a report by the consulting firm McKinsey & Co. It found that 53 percent of plans had narrow hospital networks in 2017, up from 48 percent in 2014.

“Narrow networks are a trade-off,” said Paul Ginsburg, a health care economist at the Brookings Institution. “They can be successful when done well. At a time when we need to find ways to control rising health care costs, narrow networks are one legitimate strategy.”

Ginsburg also notes that there’s no evidence to date that the quality of care is any less in narrow versus broader networks, or that people are being denied access to needed care.

Mike Kreidler, Washington state’s insurance commissioner, said ACA insurers in that state “are figuring out they can’t get away with provider networks that are inadequate to meet people’s needs.”

“People have voted with their feet, moving to more affordable choices like HMOs but they won’t tolerate draconian restrictions,” Kreidler said.

The state is stepping in, too. In December 2017, Kreidler fined one insurer — Coordinated Care — $1.5 million for failing to maintain an adequate network of doctors. The state suspended $1 million of the fine if the insurer had no further violations. In March 2018, the plan was docked another $100,000 for similar gaps, especially a paucity of specialists in immunology, dermatology and rheumatology. The $900,000 in potential fines continues to hang over the company’s head.

Centene Corp, which owns Coordinated Care, has pledged to improve its network.

Pennsylvania Insurance Commissioner Jessica Altman said she expects residents buying insurance in the individual marketplace for 2019 to have a wider choice of providers in their networks.

“We think and hope insurers are gradually building more stable networks of providers,” said Altman.

New State Laws 

Bad publicity and recent state laws are pushing insurers to modify their practices and shore up their networks.

About 20 states now have laws restricting surprise bills or balance billing, or which mandate mediation over disputed medical bills, especially those stemming from emergency care.

Even more have rules on maintaining accurate, up-to-date provider directories.

The problem is the laws vary widely in the degree to which they “truly protect consumers,” said Claire McAndrew, a health policy analyst at Families USA, a consumer advocacy group in Washington, D.C. “It’s a patchwork system with some strong consumer protections and a lot of weaker ones.”

“Some states don’t have the resources to enforce rules in this area,” said Justin Giovannelli, a researcher at the Center on Health Insurance Reforms at Georgetown University. “That takes us backward in assuring consumers get coverage that meets their needs.”

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Wednesday, October 31, 2018

Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer, Part 5

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association


Editor’s Note: This story is the final in a series of five about the author’s personal experience with metastatic (stage 4) breast cancer. This post details the author’s meetings with congressional staff in Washington, DC, advocating for metastatic breast cancer research funding. (Metastasis happens when cancer spreads to other organs in the body, such as the liver, lungs, or brain.)

Wednesday, Oct. 10 marked the second and final day of METAvivor’s “Stage IV Stampede,” and already it had been memorable. I marched among a crowd of people to Capitol Hill, demanding more research for metastatic breast cancer (MBC). We also took part in a “Die-In” demonstration, honoring the nearly 40,000 people who die from MBC every year. My grandmother died of MBC in August, so I participated in her memory.

Ready…Set… Go, Go, Go. 

The tearful “Die-In” had ended. Time to steel myself for action.

My fellow METAvivor activists and I walked to the Dirksen Senate Building to receive our schedules for meeting with members of Congress.


Stampede participants gather
for one final meeting before
speaking with congressional
staff.
Dane Christensen, the Health and Medicine Counsel of Washington’s lobbyist, invited people from Texas and Ohio to raise our hands. I saw about a dozen hands go up. He said we would walk together to the Hart Senate Building, home to our two states’ senators’ offices. I met my Texas teammates: Sarah, a young Dallas woman who came to DC to honor her godmother; Elaine, an MBC survivor from Houston; Vicki, another MBC survivor from Dallas (accompanied by her teenage son); and Carl and Sylvia, a Lubbock couple whose daughter had Stage III cancer while pregnant with their grandson.

Once inside, my group headed to Sen. John Cornyn’s office. There we met Patrick Michaels, the senator’s legislative correspondent.

One by one, we shared our stories. Vicki, the MBC survivor from the Dallas area, listed the two House bills METAvivor supports: the Metastatic Breast Cancer Access to Care Act (H.R. 6114) and Cancer Drug Parity Act (H.R. 1409). She said in the coming weeks she had to decide whether to quit her job to receive treatment. She described how the stress of that decision and worry about paying for her treatment would affect her family.

Elaine, the MBC survivor from Houston, said her cancer twice appeared in her breast, and moved to her lung, brain, and now — possibly, her spine. She fought back sobs as she revealed the spine diagnosis; she hadn’t even told her family about it yet!

My heart sank — but I admired the courage to share her vulnerability with us in that room.

Legislative correspondent Patrick Michaels (left), meets with
METAvivor's Texas team.
I was next to speak.

 I told Patrick my grandma passed away from MBC in August. “Losing her has been so hard for me, but I knew I wanted to turn my grief into action, so that’s why I’m here,” I said.

He looked at me with a notable sincerity.

“My grandma actually passed away from MBC a few years ago, so I understand where you’re coming from,” Patrick said.

When I heard that, I felt encouraged about the meeting. Patrick told us he would read both bills and brief Senator Cornyn on everything.


When we arrived at the Rayburn House Office Building, our Texas team split up. Vicki, her son, and Sarah headed to Rep. Pete Sessions’ office because his district covers their area in Dallas. Elaine, Carl, Sylvia, and I  walked to Rep. Kenny Marchant’s office. Congressman Marchant represents the 24th Congressional District, also in the Dallas-Fort Worth area.

There we met Lindsay Hurley, the congressman’s staffer.

She didn’t appear to be that much older than I am.

I briefed her on the two bills, and talked about my grandma’s diagnosis.

“While it may be Breast Cancer Awareness Month, a lot of focus is on early detection,” I said. “That’s important, of course, but what about the people who find out they have cancer at a later stage?”
(Left to Right): Carl, Lindsay Hurley, Elaine, Olivia, and Sylvia
pose outside Rep. Kenny Marchant's office.

Thankfully, she understood.

“My aunt had cancer, Stage III, and I know our family was scared about it coming back at some point,” Lindsay said.

Before she walked us out, she addressed me.


“I’m sorry to hear about your grandmother, too. I lost mine last year and it’s not easy.”

“Thank you,” I said. “Grandparents are a treasure.”

Final Thoughts

I spent my last night in DC packing my suitcase, and I called my mom.

“Hey mija,” my mom answered. “How was your day?”

I told her about the Capitol March and the Die-In. I shared Elaine’s personal story, and how this courageous stranger shared her awful news that day — news she had yet to tell her own family. I tearfully told my mom how the trip opened my heart even more to other people suffering from MBC.

 “I’m so proud of you,” she said. “Your grandma would be, too.”

Olivia holds a photo of her late grandmother, Estela.
I always knew my grandma would be, but hearing those words made everything more real. Upon my return to Texas, I’d revert to my daily routine, but I didn’t want my advocacy to end with this trip. I still don’t. I want to keep fighting for better treatment for these survivors. I want Congress to pass both the Metastatic Breast Cancer Access to Care Act and Cancer Drug Parity Act, and increase metastatic cancer research funding. I want this terminal disease to become a treatable condition, where men and women with this diagnosis can live longer and be with their families. I want my grandma’s legacy — the strong woman she was, both before and after her diagnosis — to live on, because as we chanted on Capitol Hill, stage 4 survivors need more.

They deserve more.

(For more information or to get involved, visit https://www.metavivor.org/.)



VIDEO: Adversity to Advocacy: A Granddaughter's Story of Stage 4 Breast Cancer


TMA Media Relations Coordinator Olivia Suárez travels to Washington, DC to advocate for more stage 4 breast cancer research funding after losing her grandmother to the disease. Video highlights key moments from the "Stage IV Stampede," including the METAvivor advocacy training, march to Capitol Hill, Community Die-In, and visits with congressional staff.

Tuesday, October 30, 2018

Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer, Part 4

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association
Editor’s Note: This story is the fourth of five in a series about the author’s personal experience with metastatic (stage 4) breast cancer. This story talks about the author’s participation in the advocacy group METAvivor’s “Stage IV Stampede”, the march to Capitol Hill and the “Die-In” remembrance event on the Capitol Lawn. 

Before traveling to Washington, DC, I had no experience with politics or advocacy. But after my grandma passed away from metastatic breast cancer (MBC) in August, I wanted to use the grief I felt to make a positive change on behalf of people currently battling the disease.

The experience felt more real when I met Rhonda and Corinne at the METAvivor Stage IV Stampede advocacy orientation in Washington, the night before our big advocacy day. The two women are MBC survivors and mothers of young children. They left me in awe. Each had faced a horrible disease like cancer twice, but never let it break their spirits. Instead, they were here fighting for a better future; one they saw with their families. Their drive inspired me to do my best tomorrow, our METAvivor advocacy day. We would stage a march, a demonstration, and ultimately lobby lawmakers for support in the fight against this disease.

“Stage 4 Needs More”

"Stage IV Stampede" participants
received a sign to carry at the march. 
I woke up the next morning with a sense of urgency.

Around 8:15 am, I arrived at the group’s hotel lobby and entered into a crowd of white MBC t-shirts. The march to the Capitol Building wouldn’t be starting for another half hour, so I sat down in the lobby to review notes on the legislation we would later discuss during congressional visits on Capitol Hill: the Metastatic Breast Cancer Access to Care Act (H.R. 6114) and Cancer Drug Parity Act (H.R. 1409)

A woman named Tammi sat down in the chair beside me.

“Hi there,” she said. “Where are you from?”

“Hey,” I said. “I’m from Texas. I’m here in honor of my grandma.”

I shared my story with her. She listened intently, then shared that she was from the Northeast, and was diagnosed with MBC a few years back. She had young children. Tammi brought the conversation back to me.

“You know sweetie, your grandma would be so proud of you being here,” she said. “The fact that you came all this way by yourself, and after only two months. Don’t discredit your being here.”

I watched her walk away to join her friend, a woman named Monica. She served on the METAvivor board, and is currently battling MBC. In fact, she was slated to start another round of chemotherapy in a few days.

Tammi approached me again a few minutes later.

“Hey Olivia, do you want to march with Monica and me at the front of the line?”

I nodded. Tammi then introduced me to Monica, who gave me a hug. She looked so young.

“Olivia, that’s my daughter’s name,” Monica said. “We’re so glad you’re here for your grandma.”

“Thank you,” I said. “I’m really happy to be here.”

Before we could continue our conversation, several organizers ushered us outside of the hotel. It was time for the March to the U.S. Capitol to begin.

Olivia Suarez, along with dozens of men and women,
march to Capitol Hill for stage 4 breast cancer research. 
“Alright everyone, we need you to be loud when you repeat these chants. We want everyone to hear our cause,” one organizer said.

My heart started to beat fast.

Say it with me, Stage 4 needs more!

It was time for the advocating to begin.



113 Rings
Participants hold the names of men and women who died from
metastatic breast cancer in the past year at the "Community Die-In."
“What do we want?”
“Research!”
“When do we want it?”
“NOW!”

Dozens of us shouted these chants during the march to Capitol Hill. I had never participated in a demonstration before,  but marching with these survivors, raising my MBC sign, demanding change — it made me feel like I had purpose. Here I was, marching in Washington, DC, of all places. I couldn’t get enough of it.

About 15 minutes later we arrived at the Capitol Lawn. Organizers ushered us in for the “Community Die-In,” an event designed to represent the 113 women and men who die from metastatic breast cancer every day. That’s almost 40,000 people each year.

Olivia Suarez holds a photo of her grandmother
during METAvivor's "Community Die-In."
I settled on a spot on the grass in front of the event’s speakers. A volunteer handed me a card with the name “Sarah Swanson” written on it. Sarah was one of women who lost her battle with MBC in the last year.

After a few brief speeches, we all laid down on the grass in silence, holding the card of the individual we were given. Before doing so, I pulled a photo of my grandma out of my bag. I wanted her to be acknowledged as well.

Organizers played a touching song as we laid there. I wept.

After the song ended, they rang a bell 113 times — again, to commemorate the 113 women and men who die from MBC every day.

For me, the tears kept coming. I just couldn’t stop crying. I had heard the Die-In was a cathartic experience. Now I understood why.

Watch for Olivia’s final “Adversity to Advocacy” blog post on MeAndMyDoctor.com: Ready… Set… Go, Go, Go: Taking Our Cry to Congress.

Monday, October 29, 2018

Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer, Part 3

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association

Editor’s Note: This story is the third of five in a series about the author’s personal experience with metastatic (stage 4) breast cancer. This story in particular talks about the author’s decision to take on an advocate role by traveling to Washington, DC, shortly after her grandmother’s passing.

My grandma passed away on Aug. 4, 2018 after an 18-month battle with metastatic breast cancer (MBC). Metastasis is when the cancer spreads to other organs in the body, such as the liver, lungs, bones, and brain. 

Losing her motivated me to act.

Turning Grief into Action 

Two weeks after she passed, I received an email from METAvivor, a nonprofit whose goal is to raise further awareness about MBC and provide resources for men and women currently battling the disease. I had raised $1,000 for the nonprofit back in March. 

METAvivor’s email sought volunteers from across the country to travel to Washington, DC, on Oct. 8 and 9 to advocate for advancing medical research and improving access to quality health care for MBC patients. According to the nonprofit’s website, only about 2 to 5 percent of the funds raised for breast cancer research are spent on studies of metastasis, and the group sees a need to boost that.

People who would participate in the “stampede” would visit the offices of their respective senators and representatives to educate them about these issues. 

“Am I qualified to even do this?” I asked myself. I was still learning how to handle my grief. I also didn’t have any experience with politics and voicing my own opinion on an issue like health care. 

But the email said volunteers didn’t need to have a background in government to take part.

I stared at the laptop screen, wondering if I was crazy to travel halfway across the country and lobby on behalf of people battling stage 4 breast cancer. 

Well,” I thought. “If it’s meant to be, it will be.” 

Ms. Suárez Goes to Washington 

“This is so beautiful,” I thought, having decided to make the trip.

Olivia Suarez  in Washington,
DC.
The sun was setting on the National Mall. Ducks swam across the Lincoln Memorial Reflecting Pool. Several families posed for photos. Others rode bikes. 

I raced up the steps of the Lincoln Memorial. 

When I reached the top, I turned my head toward the Washington Monument. There, I caught the sky in a mixture of pink, blue, purple, and orange. No words or photos can describe just how breathtaking it was.

When I reached the top, I turned my head toward the Washington Monument.
The Lincoln Memorial.
There, I caught the sky in a mixture of pink, blue, purple, and orange. No words or photos can describe just how breathtaking it was.

The next two days would be hectic with training and meetings, but I had never felt more ready.


Time for Training

It was GO day, Tuesday, Oct. 9: the first day of METAvivor’s “Stage IV Stampede.” 
I walked into the hotel to find dozens of men and women crowded around the registration area.
My heart raced with anticipation as I took my seat. 

A man named Michael, who I later learned was one of METAvivor’s board members, approached the podium. 

“Welcome everyone to this year’s Stage IV Stampede,” he said. “We’re so glad you’ve traveled to DC to join us.”

The crowd of dozens of people burst into applause. 

Dane Christiansen, executive vice president of the Health and Medicine Counsel of Washington took the stage. He detailed how our meetings with congressional staff would go the next day. 

METAvivor's "Stage IV Stampede"
training in Washington, DC. 
He then explained the talking points we would present to staffers. First, we were to explain the need for $2 billion more funds for the National Institutes of Health (NIH). The NIH supports basic, translational, and clinical research into various diseases and disorders. Each year Congress decides how much funding should go to the NIH and the National Cancer Institute (NCI), and includes recommendations for research areas of support and interest. 

METAvivor’s hope is for more NIH funding to expand research into controlling and eliminating cancer that has already spread throughout the body.

Dane also coached us to encourage Congress to support the Department of Defense’s Congressional Directed Medical Research Program, which recently has begun to prioritize metastatic cancer research. 

Another goal was to educate both representatives and senators about two bills currently in the House of Representatives. The first bill, H.R. 6114, is the bipartisan Metastatic Breast Cancer Access to Care Act, which would eliminate the Medicare waiting period for patients with metastatic breast cancer. (Currently, such patients have to wait at least six months –often nearly 24 months – for Medicare coverage to fight the disease.) 

The second bill, H.R. 1409, the bipartisan Cancer Drug Parity Act, would ensure patients pay the lowest out-of-pocket costs possible, regardless of where they receive care, or form of treatment. 

Our teams were to encourage representatives to co-sponsor both bills, and for senators to introduce companion bills and work to see that the House bills are enacted. 
Ms. Estela Shimanek, the
author's grandmother.

Above all else, we were to share our personal stories about how MBC had affected our lives. 

That got me fired up. After nearly two years of having this disease put my family through the ringer, I was ready to speak up. 

Watch for the fourth part in Olivia’s series on MeAndMyDoctor.com, “Stage 4 Needs More.”

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