Dialysis Patients’ Lives Depend on
Fast Action in Disaster Situations

Overview of Dialysis
Dialysis is a life-saving therapy for patients with end-stage renal disease (ESRD), also known as “kidney failure.” ESRD patients need to dialyze three times per week, for three to four hours each treatment, which requires more than 30 gallons of water. The water used for dialysis must be purified and specially-treated. If a patient misses even one treatment in a week, there are serious consequences for the patient’s health. And, for a patient who misses more than one treatment, they are in serious jeopardy of death. Moreover, ESRD patients typically suffer from additional co-morbidities, such as hypertension and diabetes. Overall, this is a very medically complex and economically vulnerable patient population.

Hurricanes Katrina and Rita Case Study:
Pre-Storm Effects of Dialysis Providers
Because of the time-sensitivity of dialysis and the need for clean water, electricity and supplies, providers in the areas hit by Katrina and Rita knew they had to act quickly in preparation for what the storm would bring. These preparations included:

• Contacting patients as weather warnings were issued and evacuating patients as much as possible in the areas expected to be hit.

• Dialyzing patients in advance of the storms and assisting patients in finding alternative clinics inland.

• Establishing multiple command posts throughout Mississippi, Alabama, Louisiana, and Texas as staging areas for truckloads of emergency equipment and supplies.

• Distributing emergency/evacuation kits, which included necessary information to educate patients on emergency diet restrictions, limited medical record information for the patients to have with them at all times, information for receiving clinics in order for patients to receive treatment, and listings of clinics in nearby areas where patients could seek treatment.

• Stationing nurses at local hospitals to take care of patients in the event of emergency dialysis needs.

• Maintaining lists of emergency contact information for patients and staff to be able to contact individuals after the storms, and establishing disaster response teams with 800 numbers for patients to call.

• Communicating with necessary parties to maintain contact with other dialysis clinics and coordinate efforts among providers, as well as coordinating the collection of emergency supplies, water, generators, and staff assistance.

Post-Storm Efforts of Dialysis Providers
After the storms, providers doubled their efforts and worked around the clock to reopen facilities in order to continue providing dialysis services to their patients. Some facilities were reopened within 24 hours due to the efforts of providers. Other efforts include the following:

• Tracking and locating patients and staff with the use of command stations and various Web updates on company Web sites, and assisting patients and family members in finding facilities.

• Coordinating daily and weekly calls among the staff and the different facilities to provide updates on progress and to discuss relevant issues, and maintaining contact with CMS and renal networks to provide updates on the facilities and determine ways to provide services to patients in need, as well as to secure fuel deliveries.

• Establishing “villages” of motor homes and RVs for patients and staff in need of shelter.

• Organizing and providing food, shelter, clothes, and money donations to staff and patients; providing emergency generators to staff for their homes; and organizing relief and disaster funds.

• Treating patients without insurance or medical records or those routinely dialyzed by other providers.

Looking Back and Looking to the Future
Clearly, the disastrous impact of Hurricanes Katrina and Rita was widespread and unexpected, and took a tremendous toll on patients, providers and the healthcare infrastructure. Dialysis providers have made significant strides to repair and rebuild facilities serving tens of thousands of ESRD patients along the Gulf Coast. Although dialysis facilities have not been rebuilt in various areas because patients have not returned to those areas to live, The Kidney Care Council members are dedicated to continuing to rebuild facilities as patients return and committed to delivering quality care to dialysis patients effected by disaster related events.

Moving Forward for the Future
The Kidney Care Council member companies have agreed to work collaboratively to:

• Make available a toll-free number for patients and providers to use for patient assistance in the event of natural disasters or similar emergencies;

• Treat any and all patients that require assistance, regardless of where they usually receive dialysis services and their insurance status;
  

• Provide to each state, city and county Director of Emergency Management the name, address and a contact person for every dialysis facility in their jurisdictions to begin the effort of working with those directors to include dialysis facilities in their emergency management plans.

Kidney Community Emergency Response Coalition
CMS, through a contract with the Florida ESRD Network, convened a National Disaster Summit on January 19, 2006 to review lessons learned post Hurricanes Katrina and Rita, to review and develop best practices, and to plan for the future. Eighty individuals, representing over 50 organizations across 25 states and the District of Columbia participated in the national Summit. During the Summit, a national “Kidney Community Emergency Response Coalition” was formed to assist state and local efforts in meeting the needs of individuals with kidney disease. A final report was developed from the National Disaster Summit summarizing the activities and accomplishments of the initial meeting.

National Disaster Coalition Preparedness and Response for the ESRD Community Disaster Summit Final Report

The Kidney Care Council is represented on the Kidney Community Emergency Response Coalition and through their representative is working with Coalition entities to:

• Raise public awareness of the critical needs of individuals with kidney failure and the providers that serve them, and the need to plan ahead to ensure that life saving dialysis services are available and obtainable in the event of an emergency and disaster;

• Promote and disseminate tools and resources that are available to individuals with kidney failure, dialysis facilities, and federal, state, and emergency workers;

• Test and refine the national response strategy that has been put into place to assist federal, state, and local efforts in the event of an emergency and/or disaster; and
  

• Plan for a potential flu pandemic.

Key Information to Help Individuals with Kidney Failure
During an Emergency of Disaster

Coalition Activities & Referral Information
A comprehensive listing of activities, tools, and resources that are available and links to resources and services can be found at: www.kidney.org/help. In the event of a disaster, call 1-888-33KIDNEY (1-888-335-4363) for information on how to obtain the service or assistance you need.

End Stage Renal Disease Networks
The End Stage Renal Disease (ESRD) Networks (under contract with the Centers for Medicare & Medicaid Services, “CMS”) will provide assistance locating a dialysis facility and provide assistance related to transplantation, and will also provide information on where needed supplies and services may be obtained.

The ESRD Networks are also responsible for assisting federal, state, and local emergency personnel and coordinating national response efforts when needed. While any ESRD Network can assist you, the ESRD Network that provides services in your state is most familiar with the services available and facility locations.

For a listing of all 18 ESRD Networks, the states where they provide services, and their toll free number, visit www.esrdnetworks.org. If an ESRD Network is impacted by the event, an ESRD Network will be designated to assist you. To find out which ESRD Network has been specifically designated to assist in a particular state, call the Forum of ESRD
Networks at: (866) 901-ESRD (3773).

Dialysis Services
If you are trying to locate a facility to obtain dialysis services and the regular treating facility does not have back-up arrangements in place, in addition to the ESRD Networks, you can call any of the following provider organizations for help. If you previously received care in a facility that is part of particular organization, it is best to call that organization’s number, as they can more easily get information from your electronic medical record. However, any of these organizations will help you, even if your facility was not part of one of them.

Status of Impacted Facilities
For an on-line listing of the “open” and “closed” status of facilities in an impacted area, the services they provide, and a map to assist in locating the nearest facility, visit:
nephron.com or https://dialysisunits.com.

Transplant Assistance
For assistance related to a transplanted kidney, contact the United Network of Organ Sharing (UNOS) (patient services) at: 1.888.894.6361 or www.unos.org.

Staffing Issues
For information on available volunteers, or to register as a volunteer, assistance can be found at: www.ANNAnurse.org or 1.888.600.2662. If a disaster occurs, displaced physicians will be able to register at: www.renalmd.org.

Supplies, Equipment, & Medications
To find the link to where a dialysis facility can obtain assistance with supplies, equipment, and medications visit: www.kidney.org/help.

Patient Assistance
Individuals or social workers (on behalf of an individual) can find information on available supplies, equipment, food, funding, etc. at: www.kidneyfund.org or 1.800.638.8299.

For more information on the Kidney Community Emergency Response Coalition scope of work and resources:  http://www.kcercoalition.com/default.htm

Hurricane Planning and Preparedness
Fresenius Medical Services:  Disaster Response
October 21, 2005

Responding to Natural Disasters
Davita