The Aftermath for Hemophilia Patients 30% of all hemophilia patients in Louisiana were displaced by Katrina (another 10% by Rita) The factor pharmacy run by the state and based in New Orleans was inoperable; this pharmacy served the majority of Louisiana patients
The Aftermath for the HTC 10 team members were spread out over 6 states No one could return home or enter the city No way to contact Tulane University (no one even knew if Tulane would survive) No access to HTC funding
What Worked The resilience and strength of the patients The commitment and dedication of the HTC team members The support of the larger hemophilia community
The Major Necessities after a Disaster Communications Meeting patients’ immediate needs Space for HTC staff –to live –to work –to hold clinic Money
The Aftermath for the HTC For 5 weeks, no one was allowed to enter the city HTC offices were not accessible for nearly 2 months Lesson: Figure out the essentials and make sure you have access to them!!
The Essentials Contact information on all team members, colleagues, etc. Personal data such as licenses, malpractice information, etc Patient database with contact information –“give us a contact person in another state who will always know where you are” Plan for meeting patients immediate needs –how to obtain factor concentrates and emergency care
Within 24 hours Made contact with the community involved to offer assistance; Tulane HTC staff, State of Louisiana Factor Program, NHF, CDC, MCHB, HOG and various manufacturers. Developed plan with internal staff to communicate supporting patient needs from Louisiana; clinical, psychosocial and/or medication. Started fielding patient calls to assist.
Internal operations Developed an intake sheet and chart as patients called in so that all the information would be kept together and identified. Began scheduling doctor’s visits if needed. Started dispensing medications to patients in need through Gulf States Pharmacy. Eventually developed a database with identified “Tulane” patients who were being followed by Houston team for clinical or medication needs.
Biggest challenges Making things up along the way. Explaining to upper management what we were doing with our purchases of extra product for the community. Developing a new tracking system to monitor product purchased and replaced. Assuring Louisiana patients that services will be back up and operational for them.
Biggest rewards Ability to support the Tulane HTC staff and patient community in anyway possible, from facilitating a phone call, checking in with staff persons or dispensing medication. Immense concern and support from the community at large for our fellow regional HTC and our own HTC. Tremendous support from the manufacturers in providing compassionate care product to those patients impacted by this disaster. The privilege of any impact we may have had to better someone’s day.
Immediate future planning faced by Hurricane Rita Within 48 hours, developed an HTC staff emergency contact list. Backed up our patient data on University system and made flash drives for medical staff “just in case.” Contacted HOG for pharmaceutical support for Houston area and Tulane area patients as needed. Worked with the University system to receive planning and closing updates.
Future planning Based on experiences, HTC developed a disaster preparation packet of information for patients that is mailed at the beginning of summer. Re-evaluated data that we keep on patient profiles and an HTC staff emergency contact list is updated yearly Patient data is stored at larger University server with automatic backups.