Miguel Escobar, MD, the medical director of the Gulf States Hemophilia and Thrombophilia Center, a hemophilia treatment center (HTC) in Houston, has more experience with hurricanes than he cares to recall.
“Harvey was my sixth hurricane,” he says of the Category 4 storm that slammed the Texas Gulf Coast in late August 2017. “There was Hurricane Andrew, another in Cancun, two more in Houston…,” Escobar continues, his voice trailing off. His experience isn’t limited to treating patients during these natural disasters, either: When Harvey hit Houston, Escobar and his family had to evacuate. One thing that’s common to all the emergencies he’s been through, Escobar says, is that too many people wait until the crisis hits and then scramble to respond.
“It’s human nature to wait and see,” Escobar says, “but when health and safety are in jeopardy, we need to be more proactive.” The Gulf States HTC has taken a more assertive role in encouraging the Houston-area bleeding disorders community to prepare for crises in advance. In May 2017, the center began sending disaster preparation packages to its 700-plus patients. The packages include lists of useful websites, local emergency contacts, where and how to relocate if necessary, and specialty pharmacy information. It also urges patients to have extra doses of factor on hand.
Celia Patiño, whose oldest son, Carlos, has hemophilia, can confirm that being prepared before Hurricane Harvey was a blessing. She and her family live near Addicks Reservoir on Houston’s west side. When news reports warned that the reservoir would overflow and flood the neighborhood, she had an emergency kit ready, including contact information for the Gulf States HTC staff. The Patiños evacuated to Celia’s brother’s house several miles away.
Amid the family’s uncertainty about potential storm damage to their home was worry over Carlos’ factor supply. “We had just two doses,” Patiño says. “We called the Gulf States HTC, but they had no way to deliver it to us during the storm. Finally, when the water receded, they delivered it to my brother’s house.”
That’s how it should work, Escobar says. During a disaster, center staff “communicate constantly—on Facebook, Twitter, messaging—and we check those sources all day,” he says. Staff members provide their cellphone numbers to patients in case the HTC and pharmacies have to close, which they did during Harvey. “We had patients calling—‘I’m somewhere, I need factor’—and we were able to find pharmacies and ship factor to wherever they were staying.”
To ensure community members have access to factor, “Atlanta is our backup,” Escobar says, referring to Hemophilia of Georgia, which operates a nonprofit pharmacy that delivers clotting factor directly to consumers. Harvey wasn’t the first time Hemophilia of Georgia came to Houston’s rescue: It dispensed and shipped factor to Texas during Hurricane Katrina in 2005 and Hurricane Ike in 2008.
Chapters Get Organized
Like Escobar, Patrick Dunlap, former executive director of the Hemophilia Foundation of Northern California, has coped with his share of natural disasters. Foremost in recent memory were the massive wildfires centered in Sonoma County in fall 2017.
The fires forced tens of thousands to evacuate their homes. One member of the area bleeding disorders community, a tenant with no renters insurance, left home with only the clothes on his back, Dunlap says. The Northern California chapter helped get the word out that the man needed assistance. “The community really rallied to help with clothing and incidentals. It was wonderful to see,” Dunlap says. “And we made sure he had the factor he needed. The vice president of the board worked in insurance, so he was even able to help iron out insurance issues—but he does that for all emergencies, not just fires.”
Dunlap says the wildfires and other emergencies in recent years were a wake-up call for the Northern California chapter. “We learned we need a better plan,” he says. “What if an earthquake happens? How can we reach people?” He says the chapter is addressing these issues. One idea it’s exploring is helping people within the bleeding disorders community get satellite phones, which don’t rely on cellphone technology infrastructure that can be damaged during natural disasters. Training is key, too, so the chapter’s annual Family Education Day added a session this year on emergency preparedness.
In Houston, Melissa Compton, executive director of the Lone Star Chapter of the National Hemophilia Foundation, has also had disaster preparedness on her mind. A few weeks before Harvey, the annual Texas Bleeding Disorders Conference, a joint effort of Lone Star and the Texas Central Hemophilia Association in Dallas, included a breakfast symposium on emergency preparedness. One outcome was an ongoing social media campaign focusing on access to factor during emergencies. The campaign also placed a new spotlight on “milds and moderates”—patients whose bleeding disorders aren’t severe, but who may have an urgent need for factor during a crisis.
“The biggest thing is to get a strategy—a solid plan,” Compton says. “Harvey circled around for a long time before it landed, and we joked a lot—but you never know how big a storm will be.” Compton recommends partnering with neighboring chapters to help ensure the broader community is taken care of in tough times, especially with access to factor.
While chapters and HTCs are busy making strategic plans to help in times of need, Escobar at the Gulf States HTC says individuals and families need to do their part, too. No matter where people live, Escobar recommends they put together an emergency plan and stay in touch with healthcare providers and others (see “Your Personal Emergency Plan” for tips). The main element in staying as safe as possible “is communication, both ways,” he says. “We’ll be there all we can, and patients have to let us know where they are and what they need. We’ll do our best, but the patient and their family also have to put some effort into it.”
Challenges in Puerto Rico
Efforts aim to improve disaster response and overall care
When Puerto Rico was battered by Hurricane Irma on September 6, 2017, and Hurricane Maria two weeks later, the wider bleeding disorders community faced different challenges than it had experienced on the mainland just weeks earlier.
As in Houston and other areas hit hard by storms, factor was needed desperately. But the island was shut down. The banks were closed, and people wanting to help couldn’t send money directly. In response, the National Hemophilia Foundation (NHF) coordinated calls with the Puerto Rico Hemophilia Treatment Center, the US Federal Emergency Management Agency, the Hemophilia Federation of America (HFA), the Coalition for Hemophilia B, hemophilia treatment centers in New York state and other bleeding disorders organizations to discuss what assistance was needed and how to get it on the ground in Puerto Rico. Multiple groups partnered to found the Together We Care fund, which HFA offered to administer through its Helping Hands program, to encourage donations for aid. NHF joined those efforts, committing to a 2-to-1 match for every dollar raised.
Puerto Rico faced significant issues in the wake of Irma and Maria. “Part of the challenge in Puerto Rico is the hemophilia center covers pediatric patients, but there’s no treatment center for adults. None. We didn’t know how many individuals were affected,” says Dawn Rotellini, NHF’s senior vice president of program development. “Beyond emergency planning, where are those patients even getting their care? Do they get any educational support? That was the difference between Puerto Rico and these other emergencies—when there’s staff on the ground, someone can help patients negotiate the crisis.”
Rotellini says NHF is collaborating with other groups to develop plans to help Puerto Rico’s bleeding disorders community better prepare for crises. It will take some time. “It doesn’t happen that smoothly,” she says, “because none of us have a perfect process in place.” One next step is getting assistance from the Red Cross, she says. “We all need to study and learn what the challenges are. What can we do to help families in an emergency, wherever they might be?”
Your Personal Emergency Plan
The best way to get through a crisis is to plan for it ahead of time. For people with bleeding disorders, that means taking extra precautions to ensure you have what you need to stay safe and take care of yourself and your family.
1. Know how you’ll get help
“Reach out to your hematologist and HTC now, when things are calm,” says Dawn Rotellini, senior vice president of program development for the National Hemophilia Foundation (NHF). “If you’re at home or traveling, make sure the HTC and specialty pharmacy know who you are, where you live, which bleeding disorder you have and your factor information. And make sure you know their emergency plan, too.” Also check in with your closest NHF chapter, which can give you “a laundry list of numbers you should keep handy,” says Patrick Dunlap, former executive director of the Hemophilia Foundation of Northern California.
2. Organize your medical information
You can be sure your medical information is safe and available to you at all times with the American Thrombosis and Hemostasis Network (ATHN) program ATHNready. Ask your HTC about the plan, which places your bleeding disorders-related health information on a flash drive in a report called the ATHNready Personal Health Report. The report contains important health information such as your diagnosis, the factor you use, and HTC and emergency contact information.
3. Prepare in advance
At the NHF website, you can download the Family Emergency Kit Checklist from HANDI, NHF’s information resource center. The guide outlines several essential to-dos before an emergency strikes, including:
• Keep multiple ice packs in the freezer.
• Keep cash in a safe and consistent place.
• Keep as much clotting factor and supplies on hand as your insurance will allow.
• Take clotting factor and supplies with you when you leave home.
• Keep a notebook with pertinent medical information, directions on mixing and infusing clotting factor, maps of the area for the HTC and hospital, important phone numbers, diagnosis and treatment regimens, and the location of a backup HTC.
• Keep a bag or small suitcase of factor and supplies packed at all times so it is easy to grab and go. (Rotate supplies regularly in line with expiration dates.)
• Have the person with the bleeding disorder wear a medical alert bracelet or necklace.
More info
HTC Directory: www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp
NHF Chapter Directory: hemophilia.org/Community-Resources/Chapter-Directory
ATHNready: athn.org/what-we-do/for-patients/being-prepared.html
HANDI Family Emergency Kit Checklist: hemophilia.org/Community-Resources/HANDI-NHFs-Information-Resource-Center/Family-Emergency-Kit-Checklist