Blog Archive

Sunday, March 26, 2017

Off to Nepal.. and Everest

I'm sitting at Gate 11, Terminal E, waiting for my flight to Nepal, and just remembered I didn't lock either of my checked bags. I never forget something like that. I'm a bit distracted: my head's on the upcoming climb to Everest base camp. Everything else is packed: climbing gear, boots, trekking poles, layers and layers of clothing (base layer, mid-layers, outer shells), medicine to cover all typical ailments including altitude sickness and bronchial infections, expedition sunglasses, hats, bandanas, gloves and liners... somehow it all fit into the North Face Base Camp bag with room to spare. I filled that room with donated stuffed animals for the kids in Nepal. hopefully it will all be there when I arrive in Kathmandu!

How are the kids in Nepal? We have about 100 of them registered with Save One Life and track their progress through our program. Nepal is one of the world's poorest countries, and yet it has a stellar Nepal Hemophilia Society run by people with hemophilia. For the beneficiaries of Save One Life, we check to see if they have enough income, are in school, and whether they get treatment for their hemophilia. We have many prominent sponsors in our community who fund these families.

Laurie Kelley with Youth Group, Nepal Hemophilia Society
September 2015
The country suffered a devastating earthquake on April 25, 2015; several members of the hemophilia community died. The hospital was damaged; homes left in piles of bricks. I toured the earthquake damage when I was there in September 2015, and realized in the global hemophilia community there is no emergency response protocol or team. It doesn't happen often, but in earthquake prone areas like Nepal, it would be a good program to establish.

See my trip to Nepal 6 months after the earthquake here. 

I'm looking forward this coming week to meeting our kids again, seeing what the needs are, how they have managed. We raised funds shortly after the earthquake with the massive help of the Mary Gooley Center in Rochester, New York, to help with housing and necessities. Patrick James Lynch and his team at Believe Ltd. is coming on this trip as well to make a documentary about life in developing countries, through the eyes of Chris Bombardier, a young man with hemophilia B from Denver, Colorado, who will be the first person with hemophilia to attempt to summit Everest!

I'll be with Chris this week as we tour homes and the hospital, and visit the earthquake areas. Then Chris, his wife Jess, photographer Rob Bradford and I all head out for Everest base camp on April 2 with renowned guide Ryan Waters of Mountain Professionals. Ryan has accompanied Chris on four of his Seven Summits. Everest will be Chris's sixth summit... and that would leave Mt. Vinson in Antarctica.
Chris infusing on a summit!

Chris would have summited Vinson by now, but he was denied access! Why?

Because he has hemophilia--a "disability." Huh. Chris has a few things to show the guys in Antarctica. 

Chris also has a few things to show his peers in developing countries. The mountain is a metaphor for overcoming any challenge. You can't get anywhere in life unless you first set your sights on a summit; get the right equipment; train, train, train--success is hard work; map your route; get a guide; then go.

Waiting to see this on Everest!
Go Chris! We wish you success and safety, and everyone thanks you for your heroic efforts on behalf of people with hemophilia everywhere!

Sign up to get notifications about Chris's historic here!

From the bottom of our hearts and hiking boots we wish to thank Octapharma for completely funding Chris's climb, and Believe Ltd.'s documentary. While there is no amount of money that can compensate Chris for his time and personal risks, none of this adventure and effort would be possible without Octapharma's generous support and more importantly, its belief in Chris and Save One Life. Chairman Wolfgang Marguerre has been one of Save One Life's biggest supporter and sponsor of children with hemophilia in developing countries. He truly believes in our mission. Thank you Mr. Marguerre and all your colleagues, including Flemming Neilsen and Carl Trenz, for your help and support!

If you would like to sponsor a chid in need, visit to learn more. Together we are improving lives with at a time.

Sunday, March 19, 2017

Wednesday's Child*

It's March, and our hemophilia community in the US is celebrating Hemophilia Awareness Month. We celebrate advances in medicine, especially how far we have come in treatment, from whole blood to plasma to factor concentrates, and now viral-free and plentiful. 

But that's only in the US and similar developed countries. Up to 75% of the world's population with hemophilia receives little or no treatment to stop bleeding. Compound that with extreme poverty and isolation, and there seems little to celebrate. 

To support the goal of Hemophilia Awareness Month, Save One Life, the nonprofit I founded, is sharing stories every Wednesday in March to illustrate the challenges and triumphs of children and adults with hemophilia in the countries we serve. 

We hope these stories will touch your heart and encourage you to become a champion of our cause--reaching out to family and friends to encourage them to sponsor a child or donate to a program. We have about 30 children in need of sponsorship--please visit our website and see these beautiful children who deserve someday to celebrate too.

Meet Rathish from India

Rathish became a Save One Life beneficiary when he was 17. At that point he had suffered so many untreated bleeds, he could no longer walk. His mother would carry him in her arms, even as a teenager, or he would use a wheelchair. Living in the country, he was confined at home, unable to go to school. For activities, he played on the computer, drew and watched TV.

Rathish's father is a day laborer, earning about $50 per month. His older brother, Sudhish, who doesn't have hemophilia, works as a welder to supplement the family's income.
When Save One Life's India program coordinator, Usha Parthasarathy, met Rathish, she was particularly touched by his condition. She organized a fundraiser to pay for surgery on Rathish's knees at a hospital 50 miles away from home. His mother used his sponsorship money to help defray other surgery-related expenses. 

It took much courage and weeks of physiotherapy for Rathish to walk again, with the help of braces and crutches. Now at age 21, he continues to build his strength with exercises and walking every day. He is home schooling at the 10th grade level, and honing his computer skills.

Meet Inderjeet from India

This is a sad story, as Inderjeet, 15, passed away on February 28 from a CNS bleed. The only son of his parents, Inderjeet complained of a headache on Sunday evening. After dinner he became sick, so his parents made the two and a half hour trip to the hospital. The medical team determined he had a CNS bleed and infused factor. 

The team decided to transport Inderjeet to another hospital with better facilities--a drive through busy city streets in Delhi--but when they arrived, the hospital did not have a bed for him. He had to go back to the first hospital. This proved to be too much. Emergency surgery never happened and limited factor infusions were insufficient to save this boy, who loved art and wanted to be an engineer. 

Inderjeet was sponsored for more than six years. In his most recent update to Save One Life, he was grateful to his sponsor and expressed his love for her.


Monday's child is fair of face,
Tuesday's child is full of grace,
Wednesday's child is full of woe,
Thursday's child has far to go,
Friday's child is loving and giving,
Saturday's child works hard for a living,
But the child who is born on the Sabbath day
Is bonnie and blithe and good and gay.

--> —A. E. Bray's Traditions of Devonshire (Volume II, pp. 287–288), 1838

Sunday, March 12, 2017

Timeless Advice on Healthcare Insurance

It's hard to know where to begin to discuss what's happening in healthcare insurance now... and what will become of the advances made with the Affordable Care Act ("Obamacare"). Right now, consider some great advice from a young man with hemophilia who had to fight for what he needed. We might all need to do this if repeals on the ACA are made. (Taken from PEN's Insurance Pulse newsletter 2015)

When Goliath Insured David: How to Get What You Need When the Giant Doesn’t Listen
Patrick James Lynch

The rules seem to keep changing even though I've had the same insurance plan for several years. How do I make sure I don’t get any unpleasant surprises in January?

Anyone with a bleeding disorder knows that navigating the healthcare system can be extremely difficult, and sometimes a downright nightmare. Unfortunately, our community’s size—or lack thereof—puts us in a vulnerable position; there simply isn’t enough education or understanding about our needs, and this happens on the medical side (hematologists and nurses) as well as on the business side (insurance and reimbursement specialists).
            I have severe hemophilia A. In early 2014 I needed a new insurance plan. I’d moved from New York to California. I didn’t know much about the healthcare culture in California, so I contacted a navigator—a person trained to assist people seeking health coverage through the Affordable Care Act’s Marketplace. I knew she’d worked in hemophilia, and thought her expertise would help me select a plan. She pointed me toward a plan with Sanitas Healthcare*, and I enrolled.
            Sanitas Healthcare works differently than most health insurance companies. For one, it’s not just a health insurance company; it’s an integrated delivery system (IDS), a network of healthcare organizations operating under one umbrella. The IDS model is one example of a managed care system that’s grown more popular in recent years as a means of making healthcare coverage cost-effective for the insurance provider. Sanitas is not only a health insurance provider, but the company owns the hospitals its patients must visit under their plans, employs the doctors its patients can see, and controls the pharmacies where its patients receive medication. In lay terms, Sanitas controls everything. It’s gigantic, with over 9 million patients across eight states plus Washington, DC. Sanitas has over 174,000 employees, and in 2013, it reported $53.1 billion in revenue. Yup, billion. Sanitas is the largest managed care organization in the United States.
            Enrolling with Sanitas I felt safe. Unfortunately, Sanitas turned out to be a terrible selection for someone with hemophilia, especially an adult patient—something my navigator friend was not aware of because she’d worked in pediatrics.

Member Services: How Can I Not Help You?
The first problem emerged immediately with the wrong information from Member Services. I was told I was unable to schedule an appointment for the first five weeks following registration. This included not being able to order factor until a Sanitas doctor wrote me a new prescription. Multiple customer services agents confirmed that there was no way around this protocol. Yet I found out later from a Sanitas executive that what I’d been told directly contradicted company policy: new patients are able to fill an active script from another doctor when they first enroll with Sanitas to ensure continuity of care.
            During these five weeks, I made numerous phone calls to Member Services; I was repeatedly disconnected, shuffled through a seemingly endless phone tree, or left voicemails that were never responded to.
            When I was finally able to make appointments, I was told by Member Services that in order to see a hematologist, I first needed a referral from a primacy care physician (PCP). I argued that I have hemophilia, a chronic bleeding disorder, and have records from a PCP visit within the last six months. This argument was fruitless; I had to see a PCP first. Later, I again learned that this is not Sanitas policy.
            When I saw the PCP, I learned it would be at least another week until I could see the hematologist, and then another five days until the factor prescription written by this hematologist would be ready at the pharmacy. I asked if the PCP would write my prescription, but he wasn’t comfortable with that. When I stressed that I was running out, he wrote a “holdover prescription” for one week’s supply.

Got Factor?
When I tried to pick up the holdover prescription a few days later—because I’d already been told many times that Sanitas didn’t provide home delivery—the pharmacy could not find my factor. One pharmacy employee actually said, “We lost it.” I was shocked, but because the hematologist appointment was only a few days away, I decided to wait. My supply continued to dwindle.
            At my hematologist appointment, I found myself in the role of teacher, explaining microbleeds, trough levels, and so on. The hematologist repeated many of the same procedures the PCP had done, checking my blood pressure and heart rate He didn’t measure or closely examine my joints. For a company that prides itself on its data, I was surprised that this hematologist didn’t measure anything. As the appointment ended, I received my full prescription for factor.
            Days later, a pharmacy employee called. She had my factor, but she said that because my policy expired on March 31, 2014, she would not release it. I told her she was incorrect because my policy didn’t even begin until April 1, 2014. She forwarded me to Member Services. After the phone rang for a solid five minutes—I’m not exaggerating; I timed it—I was disconnected.
            Throughout, I made over 50 calls, spent over 400 minutes on the phone, and spoke to dozens of employees who gave me incorrect information about Sanitas’s policy regarding newly enrolled patients, receiving chronic medication, home delivery options, the ability to see a specialist for a chronic condition, my account status, and my payment records.

Do I Have Your Attention Now?
Fortunately, I documented my entire experience, so when it became clear that I needed to take more aggressive action, I had detailed notes. I wrote a pointed, aggressive, but professional open letter to Sanitas and posted it on my Stop the Bleeding! Facebook page, then shared the post on my Twitter account and with my email list. In less than 72 hours, my letter received over 8,000 unique reads. A senior staff member at Sanitas contacted me, and I requested an in-person meeting with various senior staff to discuss the litany of problems I had experienced.
            The meeting was granted. I met with the medical director, pharmacy director, COO of clinical operations, and head of hematology/oncology. It was a semi-productive meeting. The senior staff heard my complaints and informed me of changes they’d already made to their “onboarding” new-patient enrollment process to better account for new patients with chronic diseases. The pharmacy director changed certain internal policies and implemented some education for her staff as a result of my complaints. She also agreed to put in writing that home delivery of factor for people with hemophilia was available on request. On the clinical side, I insisted that the overall quality of care was nowhere close to that offered by an integrated comprehensive care model such as an HTC, but it was clear they weren’t interested in making clinical changes. Instead, they insisted that the comprehensive care they offer is on par with an HTC’s. When I insisted that the care was simply not equal, they agreed to “look into it,” but nothing ever came of that.

Getting White-Glove Treatment
It’s been roughly one year since that meeting. I’m receiving a tremendous amount of attention from Sanitas. Clearly, I’m the “problem child” and receive white-glove treatment so I don’t cause any more PR headaches. Many flaws remain in Sanitas’s system for people with rare, chronic conditions, not the least of which is uninformed Member Services reps who are often the first contact for new patients. Fortunately, a focused effort is being led by two strong advocates in our bleeding disorder community who are collecting stories and organizing an action plan to effect reform at Sanitas.
            Here are five guidelines everyone with a bleeding disorder should follow when engaging a new healthcare company or medical service provider:

1.     You are the expert. It can be tempting to relinquish control and responsibility to an authority figure such as a doctor or pharmacy director, but you can’t afford to. You must be an expert on yourself. It’s your body. It’s your life. Own it, take responsibility for it, and fight for what it needs.
2.     Log everything. Many large companies and institutions have myriad people who answer phones or respond to emails; these people often work with minimal information, minimal accountability, and minimal incentive to go beyond the basic call of duty. Keep track of everything: names, dates, times, badge numbers—even the simple act of asking reps for this information subtly informs them that you are to be taken seriously, and if needed, you’ll have a record of your experience.
3.     Follow up again. And again. And again. Unfortunately, people don’t always say or do what they claim they will. Keep at them. Don’t allow uninformed or unmotivated employees to compromise your healthcare. Keep to your agenda until you receive the positive outcome you deserve.
4.     Use our community. The bleeding disorder community is lucky to have empowered and educated advocates. I was overwhelmed by the number of people who offered to help me during my crisis. In this community, when you reach out, people will reach back. Don’t be ashamed to ask questions and ask for help. We’re here for each other. We are each other’s rock.
5.     Stay positive and solutions-driven. No matter how noble the fight, nobody likes a rude, angry, or unprofessional fighter. It’s important to be assertive, aggressive, and diligent, but it’s unacceptable to be cruel or to behave inappropriately. If the system is broken, point out the flaws, and offer what you can to help fix it. We can’t view these companies and their staff as enemies; they’re not! They’re our allies. But a lack of adequate education coupled with laziness, defensiveness, or irresponsibility can create catastrophe.

My experience facing a true, personal healthcare crisis was eye-opening, but I knew my own personalized healthcare needs, documented everything, stood my ground, and was able to articulate my needs to the company’s executives. Being your own advocate is not an easy process, but it’s manageable, empowering, and necessary. Always keep in mind that advocating for yourself is also advocating on behalf of everyone in our community.

Patrick James Lynch, 29, has severe hemophilia A. He is co-founder and president of the digital content agency Believe Limited, through which he created and produces the award-winning hemophilia comedy series Stop The Bleeding! ( and the inspirational speaker series Powering Through He’s the 2013 recipient of HFA’s Terry Lamb Award and the 2014 recipient of NHF’s Loras Goedken Award. He lives in Los Angeles, California. Read an in-depth account of his experience at

* The company name has been changed for anonymity.