|Speakers Michelle Rice, Kelly Lynn Gonzalez, Laurie Kelley|
|Volunteers Patti Huerta, Linda Clement and|
|Intro by Michelle Kim|
Monday, May 30, 2016
See all photos from the event here.
My talk followed Michelle’s and I focused on what you need to know about product choice in order to challenge your payer to keep the drug you want. Kind of like a Hemophilia Products 101. We started with the basics: plasma-derived versus recombinant. Safety versus purity. First, second and third generation drugs. Prolonged half-life products. And what’s in the pipeline… and that was at once exciting and scary! You can see that if you are a payer, you will soon be deluged with new products. I asked the audience to guess how many factor VIII and IX drugs there are currently on the market. They replied, six? Ten? How about 24! And more to come.
The evening finished up with Kelly Gonzalez’s riveting take of how she took control of her own health care in the face of apathetic payers who did not understand VWD or her needs or that of her daughter. Kelly’s story is a model for anyone looking to achieve success in securing products and services. It’s dramatic, gut-wrenching and inspirational!
When we finished, we had the audience choose by applause where they’d like a donation from Pulse on the Road to go, and the Emergency Fund won. POTR gave $1,000 to the HFSC in recognition of its advocacy and great work for families. Michelle Kim has turned heads with her new leadership and we look forward to more great things from this vibrant chapter!
I recalled I first visited this chapter in 1992, where I first met Paul Clement and wife Linda, who are now my long-term dear friends, and also colleagues. Paul, as you may know, is an extraordinary writer and researcher for us at LA Kelley Communications. And I saw so many others I met here long ago. It was great to see everyone.
Thanks to Michelle and her team for hosting us; and thanks to Baxalta for supporting this event!
Sunday, May 22, 2016
Part of my work providing educational resources for the last 25 years to the bleeding disorder community is to remind families from time to time of the many great offerings that help us cope with a chronic disorder. I encourage you to read the below to learn more about what Pfizer has to offer the hemophilia community.
New Resources - For over 19 years, Pfizer has been a part of the hemophilia community. Pfizer understands the challenges that come with living with a bleeding disorder, and we are committed to helping improve patient lives and the lives of their caregivers. Now, a group of Pfizer Hemophilia employees is dedicated solely to providing support to the community: the Pfizer Patient Affairs Liaison. Your Pfizer Patient Affairs Liaison is available to help patients and caregivers access the support and information they need from Pfizer.
Better Accessibility - Pfizer Hemophilia Connect, a one-stop destination designed to provide easy access to all of Pfizer’s hemophilia tools and programs. The Pfizer Hemophilia Connect support team is dedicated to working with patients, their caregivers, and healthcare providers or pharmacies to connect them to helpful Pfizer tools and programs based on their individual needs.
Pfizer Hemophilia Connect can be reached Monday through Friday from 8:00 AM to 8:00 PM ET.
The content of this post is provided and sponsored by Pfizer.
Sunday, May 15, 2016
Mental Health Awareness Week begins May 15, so it’s a perfect time to think about mental health challenges that individuals with bleeding disorders and their families may often face.
People with chronic illness experience difficulties that can contribute to the development of depression, and people with bleeding disorders such as hemophilia are no exception. As early as childhood, people with hemophilia may have difficulty forming and maintaining friendships due to frequent surgeries and hospital stays, or because they need to avoid activities that other children are free to enjoy. They may appear “different” from their peers because of bruises, needle marks, or swollen joints, which can make them targets for teasing or bullying. As a result, they may struggle with social isolation, body image issues, and chronic pain, which can contribute to depression.
Social isolation and its role in depression can be a problem for people with a bleeding disorder into adulthood. Indeed, lack of social support has been noted as an important risk factor for depression in a study of adult men with hemophilia. In the same study, lack of employment emerged as another important risk factor. With a bleeding disorder, there are additional challenges to finding and keeping a job, such as the need for flexibility, adequate medical insurance benefits, and an employer who supports the rights of someone living with a chronic disorder.
Another mental health challenge for people with a bleeding disorder relates to the use of opioid medications to manage pain associated with joint bleeds and surgeries. Because patients often need effective pain relief, opioids have a distinct place in their treatment. Some individuals may be concerned about addiction. For this reason, it's important to work with a health care professional with an expertise in pain management when considering opioid treatment.
During Mental Health Awareness week and beyond, patients, parents, and caregivers should be aware of these mental health challenges. Together, we can support each other—and ourselves—throughout our bleeding disorder communities.
To get support, resources, and more to overcome challenges like mental health in your life, reach out to your local community chapter. Eligible individuals can also sign up for the HeroPath™ program and receive a personal mentor/life coach who can help keep you focused on your goals and what’s ahead. Learn more at www.mynovosecure.com.
This is a sponsored message from Novo Nordisk®.
Learn more at http://www.novonordisk.com.
HeroPath™ is a trademark of Likone Corporation.
Novo Nordisk is a registered trademark of Novo Nordisk A/S.
Sunday, May 08, 2016
Uganda Visit: Sunday April 24, 2016
Today we would visit one family in Luweero, only a two and a half hour drive north from Kampala. This time the van came at 9:30, giving me a chance to sleep in. The sky was cast in pewter, heavy and foreboding. Agnes and I again stopped at a roadside store to stock up on groceries for the family. In the back of the van we still had gift bags brought from home for the kids. We loaded up on rice, sugar, coffee, tea, lollipops… then I discovered a toy aisle! Balls, dolls, puzzles, building blocks, crayons and paper: all very inexpensive, and I knew they would be a big hit.
At last we find the little brick home of the Ssempa family, blocks made from the local soil. By now their dirt front yard was a pond. Whereas yesterday I told the driver to stay away from the house so I could snap photos without the van in front, this time I asked him to pull up as close as possible. I was wearing tan Etienne Aigner open-toed sandals, as old as the hills, but still! Grabbing all our bags, umbrella, briefcase, we plunged our feet into the warm, rusty-colored water and took two steps into the home, which we quickly saw had no floor. Just dirt. It only had two rooms in the front, maybe two in the back. And in one of the rooms was a motorbike, the driver sitting in the adjacent room, safe from the rain. A clothesline full of laundry hung over the motorbike, and next to the bike, three blue plastic chairs, where we were to sit. So we all crammed into this tiny, muddy, dusty room: Agnes, me, the motorbike, the clothes, and nine children. Justine, the mother, shuffled in, and nodded to us quietly. The children were smiling, as we all laughed over the rain drenching us. Without room to maneuver, we surrendered the food, and Justine slowly smiled. The children excitedly took their lollipops; the ice was broken. We sat down on the chairs. Agnes tried to help me keep my briefcase from resting on the floor, but we had no choice; and my briefcase is made for rugged travel.
Agnes explained again the Save One Life sponsorship program, why we were here and how we could help. Now we had to do our interviews. Nine children: Rose, Florence, Isaac, Daniel, Simon, Annette, and three with hemophilia—Kato, Vincent and Lawrence.
The children with hemophilia still attend school, which is good. The school is less than a mile away, and sometimes Justine must carry the children on her back when they have bleeds. She tells us she fears for the children with hemophilia at school. “Caning”—corporal punishment—is popular here and causes the children to have bleeds.
While she speaks, a weak and wet kitten hobbles in, sores on its back, and sniffs at my feet. A scrawny chicken pokes his head in the door then scuttles off. The children wait patiently for their turn to speak. I feel something at the back of my neck; the oldest daughter, Rose, has leaned over to touch my blond hair. Then she touches my forearm. They want to feel my hair and skin, which feels and looks different from their own. I smile and give her unspoken permission by my playful response, trying to “catch” her in the act by grabbing her hand. She smiles back.
The home is rustic: there is no running water, no plumbing, no electricity. They use candles at night. No place to keep food. How does she feed nine children? I ask about meat: do they get beef, chicken? Agnes just looked at me oddly. “Meat is Christmas,” she said. “It’s too expensive; they may have it once a year.”
I learn that Kato, the youngest child with hemophilia, had a twin brother who died at nine months from a suspected bleed. Kato is a gem. He is responsive, curious, engaging, and always ready to smile. His two brothers are more studious and quiet, and very shy. Interviewing them was difficult. But Kato couldn’t wait to show us what he knew. He can write a bit in English! On the Save One Life new beneficiary form, he carefully wrote "Cow." This was a revelation. Together with his winning personality, there is surely hope for him someday to rise above his origins.
We pinpoint the same problem we have seen with the other families: they live too far away for immediate treatment. It takes literally hours of rough travel to get to Kampala for treatment. They can’t afford the transportation costs: motorbike up to a main road, then public transport. And picture yourself on a 100-250cc motorbike on these bumpy dirt roads with a bleed, then another two hours on a public bus crammed with people. It’s pure torture.
As we return to our world, Kato's smile would cheer me, and Justine's face would haunt me for days to come.
Visit www.saveonelife.net for more information on sponsoring children with hemophilia, and to learn how you can help.
Sunday, May 01, 2016
I just returned from nine days in Uganda, to assess the Haemophilia Foundation of Uganda for application to Save One Life, Inc., and also to visit with local families with hemophilia, to better understand what their struggles are. I have to say how impressed I am with the HFU, its volunteers and the accomplishments they have made to date. With board approval, we would be able to induct them as our 13th program partner. Below is one patient visit, which will give you a sense of what families in Uganda face. Their extreme poverty (average annual income is $500) is compounded severely by how far away they live from Kampala, the capital.
It turned out to be way longer that we thought. A three-hour trip became 5+ hours trying to find this one family in Kyabbogo. At least we had a very comfortable van and Agnes is a great travel companion. She is only 29, but very mature, socially conscientious and dedicated. She's a registered social worker, and I was quite impressed by her. I wish I could have tape-recorded the things she said; so much wisdom, though I knew many of these things because it’s the same in so many countries. Her brother Joseph, now an MP (member of parliament), is the person who contacted me back in 2008 requesting help.
Back on the road we chatted openly, like family members. What a sharp girl she is, I thought; fluent in English, educated and a devout Christian. We agreed that this work was our calling in life, and nothing could stop us from helping the poor and suffering. I asked her when she knew she wanted to be a social worker.
“I always wanted to make an impact, “ Agnes recalled, “since I was young. I wasn’t sure exactly what I would do. But I loved it, the idea that I would make a difference in someone’s life. I always wanted to start an organization. I said to my friend one day, ‘You and I will start an organization to help people’.” It hasn't been easy trying to get the Haemophilia Foundation of Uganda off the ground. “Being a volunteer is difficult. Some people show interest and start to help us, but later they quit. I used to work as a volunteer for an NGO, for HIV/AIDS education.” But when Satish left, she felt compelled to help her brother full time. Now she volunteers full time, Monday through Friday and many a weekend, to run the HFU. There are days when she stays at the Mulago Hospital all day and into the evening---meeting with doctors and staff, and counseling patients.
By 12:30 pm, we arrived at Kyotera (“Choterra”), took a right, and the road deteriorated from paved to dirt roads, rowdy and unpredictable. We had stopped many times along the way, to ask locals on the side of the road where we were going. The frequent stops allowed me to drink in the fleeting scenery: the dusty, red clay roads that branched off from the highway and paved roads, forming a network like blood vessels throughout the country. Everyone seemed to move at the same pace, languid, at ease. There are no beggars and everyone works. Down one alley, a small child in shorts and plastic sandals lugs a huge blue plastic container with water and disappears into a slum. Roadside shops sit shoulder to shoulder: one sells tires, one sells headboards for a bed, unvarnished and raw, another sells colorful clothes and markets them on stark white mannequins, oddly out of place. Some young men wearing dusty clothes and a few teen girls in worn and damaged dresses—obviously donated (one is a shiny party outfit; one looks like a Halloween Tinkerbell costume; another is a tight club dress) wait patiently at a pump while a young man furiously wields the handle to draw water from the community well; a small wooden cart belches thick smoke from the meat cooking on it, filling the air with a delicious smell of beef, and I realize I am suddenly hungry; plump women, wearing colorful wraps around their waist and patterned turbans to protect their hair from the dust, balance fruit and vegetables on their head to sell or to bring home; three little children, the dust turning the color of their deep brown skin to chalk, dance in rhythm to the music pulsating from a radio in front of a store while an adult eggs them on. Everyone is barefoot, or at most wearing just sandals or plastic flip-flops.
When the children on the roadside glance at me, if they are not too shy, they break into beaming smiles and wave. It’s encouraged to wave back, and I try to keep the window down when we ask for directions so I can wave. “Muzungu!” they shout sometimes, their word for anyone not from Uganda, though mostly it refers to white people. It’s not a slur; it’s just their word, much like when the children of Haiti shouted “Blanc!” (White!) when they saw me, and tried to touch my white skin.
As we drive, the pavement gives way to hard red clay, with shoulders that sag, and the van rocks back and forth with the unevenness. The rains and traffic have created deep ruts. We roll up the windows as the van's tires churn the clay to powder. Now the roadside stands have disappeared and only solitary homes are spied through the thick vegetation. The homes for the most part are nice for rural homes. Mud poured into a wood frame, and hardened, with a thatched roof, or brick, made by hand, with a corrugated steel roof. Everything is cinnamon red. Red dirt road, red brick homes, red-rusted steel roofs. Red and green are the colors of Uganda.
There are several types of poverty: urban poverty, with slums, poor hygiene, noise, pollution, alcohol, crowding, waste—but access to hospitals and health care. There are megaslums, which defy the imagination, where residents live like ants in an unhealthy and often dangerous colony. And there is rural poverty, with lush vegetation, farm lands, rich soil, fresh air, room to grow—but a lack of transportation, customers, and most of all, lack of health care. Still, the scenery is beautiful, even if poor.
When we pass one small thatched mud structure, Agnes says, “That’s witchcraft.” Noting my raised eyebrows, she continued. “Witchcraft is still practiced here, especially in rural areas. That would be a witchdoctor’s place to meet with families. He will diagnose someone, and then offer a remedy. It is so crazy! He might say, ‘Take the fingernail clippings of your child with hemophilia, of the parents, of the relatives. Now go throw those in the river. The river will carry them away and with it, the disease. Your child will be cured.' Or he may take some backcloth and banana leaves and wrap up some part of the person—their hair, for example—and say now the disease is buried.”
She added, of course, it’s a scam. The witchdoctor will first do a bit of research. “He checks with other people who work with him, to learn more about the patient. What are their symptoms? Who is sick? Who has been sick in the family? Then when the family goes to see him, he will say, ‘It is your child that is sick?’ Yes! ‘He bleeds a lot?’ Yes! So it looks to the family like he is magical and knows everything.”
After 30 minutes of jostling, we arrive at the destination: a vermilion brick-and-mortar home with a spacious front yard of dirt, and surrounded out back by farming fields. This is where the Kajimbo family lives. We unfolded ourselves out of the van and stretched, smiling at the children who gathered in curiosity. The sun warmed our visit. We decided first to get acquainted, and then to bring in the gifts. The mother Harriett and father Richard came out of the house first, and shook hands, he smiling reservedly, she smiling in anticipation. The first thing I noticed was that their clothes were remarkably clean compared to their surroundings, as though they had just changed. Harriett’s eyes sparkled, and her hair was a woven masterpiece, plaited to perfection. Her dress was bright blue and white. Richard wore a comfortable blue polo shirt and khaki pants. They were in great contrast to the children, who were dressed in stained and torn clothes, and who went barefoot, and had dirty face and hands. It was incongruent.
Somehow barriers came down fast and we were laughing in no time. A pod of neighborhood children plugged the doorway, leaning in, eyes wide open in astonishment. The driver had brought some bags over by now, and we handed out lollipops first—no barriers were left after that. The children saw at once that they came first. There were plenty to share with the neighborhood children, which no doubt boosted the reputation of the Kajimbo family. But Ronald still did not smile.
Our funding may help the kids get back into school, or help feed them. We share the butter, rice, sugar and supplies with Harriett, who is overwhelmed by our generosity. We hand out toys, many of them simple, donated toys, especially the super-heroes and plastic creatures that have sat in a basket for two years in my basement. I finally dumped the last of them in my duffel bag, and now, Ronald holds what looks like a silver Power Ranger-wannabe in his hands. He is dumbfounded, then catches on, then finally…. Breaks into a huge smile. Boys just love action figures, no matter where they are.
We go outside and do a line up so I can take photos. We photograph January’s knee, particularly his prominent scar from surgery, before he was diagnosed. He reminds me of Mitch from Haiti, who also almost died from surgery before being diagnosed.
Back inside, January comes out from the back room with a surprise: a chicken! Agnes laughs and I hold it for a photo opp. They offer the chicken as a token of their appreciation. The poor thing had its legs trussed up and was hung upside down, then laid on the floor, immobile. Its eyes bulging, fearful, waiting to know its fate: lunch, dinner? Were we to take it back five hours to Kampala like that? I wondered what the Sheraton staff would say if I walked in with a chicken. I had to refuse, even though this was impolite. Agnes explained to the families that I love animals and could not bear to see it like this. The lucky chicken was paroled and January took it back outside.
As we prepare to leave, we do a family picture, with me holding Joel. Harriett comes out of the house, and suddenly drops to her knees before me, and holds my hand. This is unusual for an adult, I think, and I thank her but also encourage her to stand up.
Next Sunday's Blog: Our visit up north to find one family. Please check in next Sunday!
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