What if a Disaster Happens ?Here

Questions and Answers

Based on lessons learned from past disasters

For the Renal Community

1

November 2006Updated 4/2007

Prepared for you by

Heartland Kidney Network

Supported under CMS contract HHSM-500-2006-NW012C to Heartland Kidney Network

Table of Contents

Topic Page

?How Can I Prepare for the Unexpected 3 ?What If Something Happens Here 3 ( )Large Dialysis Corporations LDO 4

Independent & Hospital Based Facilities 4 Heartland Kidney Network 4

Hospital Emergency Rooms 5 Acute Dialysis Providers 5

The Government 5 Local Utilities & Services 5 Health Departments 5

?How Would A Patient Get Dialysis 6 ?What If We Need Emergency Staff 6 ?What If The Patient Is At A Shelter 6 ?Where Can I Get More Information 6

!Get Involved 6Sources 7

Suggested Reading 7Resources

Basic Facts About Kidney Disease And Treatment 9 Medicare Announces Disaster Response Plan For Individuals With Kidney Failure 10

2

- / Pre Disaster Emergency Planning 12 ? !Need Help Go Here 13

: ?Electrical Power Company Did You Know 14 : ?Water Service Company Did You Know 15

You Need to Know About

Emergency Preparedness for Individuals with Kidney Disease

16

’ Technical Considerations when Bringing Hemodialysis Facilities Water Systems Back on Line after Hurricane Katrina

19

Other Resources 21 Resource Request Form 22

An Example of Family Disaster Planning 23 / – Red Cross CMS posting from Hurricane Katrina Help for Patients 24 / – Red Cross CMS posting from Hurricane Katrina Help for Families 25

( )ESRD Conditions for Coverage Medicare Regulation 26

Note: The information contained herein is only a guideline and is not intended to be an exhaustive compilation. Much was learned from previous disasters and emergency situations. Every effort has been made to include as many of those lessons as possible. The contents are meant to be informative as well as thought provoking. The reader is encouraged to seriously consider the implications of how a disaster situation would impact his/her unique situation and form mitigating plans accordingly.

?How Can I Prepare for the UnexpectedEveryone has been encouraged to have 72-hours worth of provisions ready in case of disaster. If possible, each household should have a two-week (or longer) supply of food and water in reserve. Information on how dialysis patients can prepare is available at www.medicare.gov : Preparing for Emergencies: A Guide for People on Dialysis. General population emergency preparedness information is available at www.redcross.org and www.FEMA.gov and many other sites on the Internet. Public libraries provide Internet services if it is not otherwise available.

3

?What if Something Happens HereThe potential for a natural or man-made disaster or emergency is with us at all times. The question becomes not “ if” something could happen but rather “ when” something happens how will the renal community respond to the situation. The impact of a major emergency or disaster in Heartland Kidney Network would likely cause disruptions in the provision of services to inpatient, acute, and outpatient hemodialysis, peritoneal dialysis, and kidney transplant patients. Some of the effects on the dialysis community may include:

Treatment Related• Limited dialysis treatment availability (patients may miss treatments, and/or available

dialysis treatments may have to be shortened or delayed.)• Limited availability of supplies needed for dialysis• Limited availability or unavailability of medications• Disruption of essential services to the community (utilities, water, goods distribution, etc.)• Increased risk of infection (such as PD catheter exit site)• Increased risk of organ rejection for kidney transplant patients (due to medication

availability)• Destroyed or damaged dialysis centers and hospitals • Limited availability of medical and nursing staff members • Uncertainty regarding treatment locations

Community Related• Destroyed or damaged homes of patients, physicians, and nursing staff • Destroyed or damaged hospitals, universities, dialysis centers, and nephrology offices • Disruption of essential services to the community (utilities, water, goods distribution, etc.)• Disruption of physicians’ practices or research (The Renal Physicians Association (RPA) and

other National Disaster Task Forces are examining and strategizing plans relating to this issue.)

• Death, injury, disease, or separation affecting loved ones

Steps to Take

First – Assess the situation. Should a disaster affect the Heartland Kidney Network geographical

region, the first step is to assess the situation to determine how widespread the damage is and how many dialysis patients are affected. More information will be provided later in this guide as to how to know the status of open or closed dialysis facilities.Second – Put your emergency plans into action. Hopefully, the plans are in place and have been

tested through drills and brainstorm sessions well in advance of the emergency.Third – Maintain communication with Medical Director, staff, patients, corporate resources, Heartland

Kidney Network, and others.

( )Large Dialysis Corporation LDOLarge Dialysis Corporations may have elaborate company-wide emergency plans in place for their facilities utilize in order to respond to disasters.

• The open and closed status of the facilities would be determined. One website dedicated to this purpose is www.nephron.com

• The Large Dialysis Organizations (LDO) provide 1-800 phone numbers for patients to let them know where to go for services

4

• The LDO coordinates with Heartland Kidney Network to provide services to the patients needing dialysis.

Independent & Hospital Based FacilitiesDialysis facilities that are independently owned and/or Hospital Based face special challenges during a crisis due to their autonomous structure. It is perhaps even more important for these facilities to network with other dialysis providers pre -disaster to establish reciprocal affiliation agreements to provide dialysis services for patients should the facility be unable to perform treatments. Diligent emergency planning is encouraged for all facilities but particularly important for independent and hospital based facilities.

• The open and closed status of these facilities would also need to be determined. The website www.nephron.com is dedicated to assisting the renal community in monitoring facility status.

Heartland Kidney NetworkIn preparation for an emergency Heartland Kidney Network will:• Encourage dialysis facilities to plan for emergency situations• Provide educational materials to the renal community on topics related to emergency/disaster

In case of a disaster Heartland Kidney Network will:• List the above-mentioned 1-800 numbers for the LDOs and other helpful information

including disaster diet information for patients on our website (www.HeartlandKidney.org)• Work with the Centers for Medicare & Medicaid Services (CMS) or its contractor to maintain

a database of patient whereabouts (dialysis centers and/or shelter locations)• Assist in updating the open and closed status of dialysis facilities via the website:

www.nephron.com• Host conference calls with CMS, providers, vendors, and other entities to coordinate care for

the patients• Have another back-up ESRD Networks (bordering our states and geographically distant) to

assist us should our region and/or Network office be compromised.• Attempt to help family members locate loved ones within HIPAA guidelines• Assist treating facilities during an emergency to obtain necessary information• Assist patients during an emergency to connect with dialysis providers to arrange for care

The Heartland Kidney Network can be reached via telephone at 816-880-9990, fax at 816-880-9088, and through our website: www.HeartlandKidney.org. Patients may use our toll-free number 1-800-444-9965.

Note: Should The Heartland Kidney Network office be affected by a disaster/emergency and temporarily unable to assist you, another End Stage Renal Disease (ESRD) Network office will be assigned to help you. Please contact the Forum of ESRD Networks at 866-901- ESRD (866-901-3773) for more information.

5

: Tip Regardless of ownership affiliation, every dialysis facility must focus on:

Adequate disaster planning, communication, and re-assessment of those plans!

Hospital Emergency RoomsIt is possible that dialysis patients that normally dialyze in an outpatient facility will gravitate to the local hospital emergency room for services should their home dialysis facility be unable to provide treatments. It is the responsibility of the emergency room physician to evaluate the condition of the patient. Whether or not dialysis is provided at that time acutely depends on many factors including serum potassium levels, edema, symptoms, etc. Just presenting at the emergency room and demanding dialysis is not a guarantee that dialysis will be ordered by the emergency room physician. The possibility that large numbers of dialysis patients could present for treatment is a reality. If this occurs, please refer to the hospital policy and procedure relating to acute dialysis and how patients are to be evaluated.

Acute Dialysis ProvidersAs noted above in the section discussing Hospital Emergency Rooms, large number of patients seeking treatment may present themselves in the acute dialysis area of the hospital – perhaps even bypassing the emergency room. If this occurs, refer to hospital policy and procedure relating to acute dialysis. It would be helpful to have the listing of LDO provider contacts, the Heartland Kidney Network number, and local independent dialysis provider information. Consulting the website www.nephron.com regarding open and closed status of dialysis facilities may also be of help to the acute dialysis center. Again, pre-planning is so important to ensure that processes run smoother when disasters occur. The acute dialysis personnel would be valuable members of a community disaster planning coalition as they could provide some real-world perspective that may be lacking.

Centers for Medicare & Medicaid ServicesThe Centers for Medicare & Medicaid Services (CMS), a division of Health and Human Services (HHS) within the United States government, plays an instrumental role by supporting the various relief and aid task forces. CMS assists the dialysis centers by supporting the ESRD Networks activities, coordinating aid efforts with LDOs, and maintaining a patient database (perhaps through a CMS contractor) during a disaster. The government must take more of a 30,000-foot view of care provision in the planning, supporting, and coordinating emergency aid to dialysis and transplant patients and facilities - allowing others closer to the ground to impact care more directly. That being said please be assured that CMS cares deeply about the safety and wellbeing of dialysis patients, personnel, and facilities. Even though CMS is a few steps away from direct disaster care, it still plays a major role in the coordination and impact of recovery and relief efforts.

Local Utilities and ServicesA word to the wise here: get to know and communicate on a regular basis with a supervisor working at your local power and water companies. Be sure they are aware of the special and unique needs of ESRD patients, where your facility is located, its operating hours, and how many patients you serve. Sample information for utility companies is included in the resource section of this document.

Health DepartmentsThe Health Department is an underutilized partner in the effort to maintain good health in difficult circumstances. Before a disaster occurs, get to know people at your local Health Department. In emergency preparedness the Health Department seeks to form community partnerships with the private sector to enhance the department’ s ability to respond to large-scale events. Tell them who

6

you are and where your dialysis/transplant center is located. Share with them how many patients you serve. Discuss the implications of a disaster on the health of your unique renal community.

All Health Departments are actively involved in local and national preparedness initiatives. Actions such as offering immunizations and perhaps activating the Medical Reserve Corps to provide medical assessments and referrals are among the duties that the Health Department can perform in a community. Not only do they have resource materials and medications, but they also have the ability to communicate public assistance announcements to the general public.

?How Would Patients Get DialysisIf patients are able to dialyze at their normal dialysis facilities, they should continue to do so. If for some reason they cannot, the patient should contact the 1-800 number of their LDO, or contact their independent facility, or Heartland Kidney Network for further directions. If the patient does not dialyze with an LDO, he/she may feel free to contact one of them and inquire about obtaining treatments.

If the patient has been evacuated to a shelter, he/she should identify him/herself as a dialysis patient and be evaluated for treatment. At least one commercial product is now available to assist in the communication of renal-specific treatment needs. See resource section for more information. The patient may contact Heartland Kidney Network at 1-800-444-9965 for assistance.

?What If We Need Emergency StaffThis is one situation where the reciprocal care agreements between facilities may be helpful. Your back-up facility may be able to either send staff to your location or dialyze some or all of your patients. If your facility is part of an LDO, contact them and describe your needs. There are also dialysis teams that can mobilize to areas. In recent emergencies, the American Nephrology Nurses Association (ANNA) allowed volunteers to contact them and acted as a liaison with the emergency teams.

?What If The Patient Is At A ShelterPatients that are taken to temporary shelters are encouraged to identify themselves as dialysis or transplant patients to the officials coordinating the shelter as soon as possible. Shelters are provided with information about emergency dialysis by the network and other entities. The patient will be triaged to determine if dialysis must happen immediately or if the patient is able to wait so length of time. Arrangements are then made to provide dialysis. Note – the patient may be housed in more than one shelter during the evacuation process. As noted above, tools may be available through other vendors and sources but one commercially developed renal patient specific evacuation communicator is now available through Care Plan Solutions, Inc., Topeka, Kansas, 1-888-771-6441.

?Where Can I Get More Information• Department of Homeland Security website: http://www.dhs.gov/dhspublic/• Federal Emergency Management website: http://www.fema.gov/• Kidney Community Emergency Preparedness and Response – 1-888-333-6463• Kidney Community Emergency Response Coalition (KCERC) website: www.kidney.org• National Disaster Medical System website: http://www.oep-ndms.dhhs.gov/• Open & Closed Status of Dialysis Facilities: www.nephron.com

7

• US Disaster Medical Assistance Teams website: http://www.dmat.org/• General Disaster Information for the renal community:

http://links.nephron.com/nephsites/disasters• Facility Planning Guide by The National Kidney Foundation:

http://kidney.org/atoz/pdf/disaster_prepardness.pdf

!Get InvolvedMost cities, Health Departments, and hospitals have emergency planning coalitions. See if your community has an emergency preparedness task force established. If so, join it and represent the needs of the kidney community! If not, consider starting one yourself by inviting individuals, vendors, and service providers in your locality.

Nationally, the National Disaster Summit – represented by renal professionals, vendors, ESRD Networks, Centers for Disease Control, Departments of Health, Patient organizations, Food and Drug Administration, National Institutes of Health, Center for Medicare & Medicaid Services, large dialysis organizations, and more -continues to work within its various task forces to strategize emergency plans to assist the renal community.

Sources• Disaster Preparedness: What Have We Learned? Power Point Presentation by Glenda M.

Payne, RN, MS, CNN, Center for Medicare & Medicaid Dallas and Atlanta Regional Office.. Presented at the Fall ANNA meeting in Boston, MA.

• Disaster Preparedness: Learning from Katrina. Power Point Presentation by ESRD Network #13.

• Kopp J.B., Ball, L. K,Cohen A.,Kenney R.J., Lempert K.D., Miller P.E., Mutner P., Quareshi N., Yelton S.A. (2006). Dialysis patient care in disasters: Learning from the past and planning for the future. Clinical Journal of the American Society of Nephrology. (Submitted for publication.)

Suggested Reading• American Nephrology Nurses website – has a great deal of emergency information:

http://www.annanurse.org/cgi- bin/WebObjects/ANNANurse.woa/wa/viewSection?s_id=1073744053&tName=katrinaInfo

• Kopp J.B., Ball, L. K,Cohen A.,Kenney R.J., Lempert K.D., Miller P.E., Mutner P., Quareshi N., Yelton S.A. (2006). Dialysis patient care in disasters: Learning from the past and planning for the future. Clinical Journal of the American Society of Nephrology. (Submitted for publication.)

8

The remainder of this booklet will now be devoted to resource materials

9

!Basic Facts About Kidney Disease And Treatment

Here are some basic facts about kidney disease, how it is treated, and what you may need to do to help individuals with kidney failure access life-saving/sustaining treatments, which require electricity, safe water, specialized equipment and specially trained personnel.

Kidneys perform crucial functions. When kidneys fail, the blood must be regularly cleansed of toxins and extra fluids by using either an artificial kidney (hemodialysis), by introducing a cleansing solution into the abdomen (peritoneal dialysis), or by using a healthy, donated kidney to replace the patient’ s failed kidney function (kidney transplant). If patients do not receive dialysis within 3 days they will become critically ill and may potentially die. Many patients suffer kidney failure due to either diabetes or high blood pressure (hypertension). Both of these conditions may also require special attention and available medications that need to be taken regularly for the person to remain healthy.

( )HEMODIALYSIS HD : This treatment involves cleaning the patient’ s blood of harmful toxins and excess fluids using an artificial kidney (dialyzer) and a hemodialysis machine. Treatment requires specially trained personnel, electricity, and safe water. Hemodialysis must be done at least three times a week, for about 3 to 4 hours each time. The public water supply can be used for dialysis, but the water must be specially treated with electrically operated equipment to remove substances (such as chlorine, aluminum, fluoride and bacteria) that would harm patients during dialysis. Most dialysis clinics do not have emergency generators, so restoring electricity will be critical. Those dialysis clinics with emergency generators would need a re-supply of fuel should the emergency situation last longer than one day. It takes more time and resources to set up temporary units than to restore existing units, if those units are not severely damaged. If dialysis cannot be provided in an outpatient setting, kidney patients will overload those hospitals that provide dialysis, impair access to patients needing hospital care and present a greater challenge for hospitals that do not routinely provide dialysis.

More patients each year choose to do their own treatments at home. Should a disaster affect a home dialysis patient’ s residence, making restoration of services (water and electricity) a high priority will restore the patient’ s ability to perform life-sustaining treatment. Home patients have been encouraged to notify their utility suppliers about their status as home dialysis patients. In emergencies of extended duration, these patients would need deliveries of dialysis supplies or may need to go to a dialysis facility for their treatments until they can resume home dialysis.

( ):PERITONEAL DIALYSIS PD Peritoneal dialysis uses the patient’ s peritoneal membrane, which

surrounds the intestines, to act as a filter. A tube (catheter) is placed into the peritoneal cavity and then a special solution (dialysate) flows through the catheter into the abdomen, where harmful toxins and excess fluids move from the blood to the dialysate. The solution is then drained out and discarded. Done at home, the treatments are continuous, with 4-6 exchanges of fluid being done daily. While some PD techniques use machines and electricity, in a disaster situation, these patients would use manual techniques that do not require electricity. They would need replenishment of supplies and an environment that protects them from infection. As with hemodialysis patients, being without treatment would lead to illness and death for these patients.

10

:Tip This fact sheet could be given to Health Departments, city disaster planning committees, utility

companies, etc. to educate lay people about dialysis.

TRANSPLANT: Kidneys for transplant can come from either deceased or living donors. Patients who

have received a transplant must have special drugs to prevent rejection of the kidney and avoid exposure to infections (i.e., those that could be spread by crowds in a shelter) since the drugs they take to prevent transplant rejection also diminish the body’ s ability to fight infections.

MEDICARE ANNOUNCES DISASTER RESPONSE PLAN FOR INDIVIDUALS WITH KIDNEY FAILURE

7/27/2006

Reference: CMS Press Release MESSAGE 200607-14The Centers for Medicare & Medicaid Services (CMS) today announced that CMS and other Federal Agencies have joined with organizations and healthcare providers in the kidney community to form the Kidney Community Emergency Response Coalition and to develop a nationwide disaster response plan.

“ The Kidney Community Emergency Response Coalition is an excellent example of effective collaboration,” said CMS Deputy Administrator Leslie Norwalk. “ This is a model of how we can work together to ensure that health care needs of individuals with kidney disease are met, even in a time of a disaster.”

The Coalition will ensure that national resources are in place to assist state and local response efforts in meeting the life saving medical needs of individuals with kidney failure in the event of a disaster.

Kidney failure (End Stage Renal Disease, or ESRD) is a life threatening condition. As of March 2006, there were nearly half a million individuals with ESRD in the United States. Individuals with ESRD require medications to prevent rejection of a kidney transplant if they have received one, or regular repeated dialysis treatments to clean the blood supply, as frequent as three to four times a week, if they have not. Going without dialysis for even a short time can result in severe illness or even death for an individual with ESRD.

Dialysis is dependent on the availability of electricity, gas, supplies, and water--commodities that, without proper planning, are difficult to access in the event of a disaster. One dialysis treatment alone requires a minimum of 100 gallons of pressurized, clean water.

“ Other healthcare provider groups, in preparing for disasters, can learn a great deal from the kidney community, Barry Straube, M.D., CMS Chief Medical Officer and a nephrologist. “ This effort will help save lives by making sure critical needs such as supplies, medications and services are available.”

The kidney community understands the continued need for improved processes. Toward this end, representatives from over 50 healthcare organizations across 25 states and the District of Columbia participated in a national summit hosted by CMS in January to review lessens learned in recent disasters, and use these lessons to plan for the future. The Kidney Community Emergency Response Coalition was formed, at the summit, with the National Kidney Foundation serving as the administrative coordination lead for Coalition activities.

The Coalition is comprised of partners representing kidney patient and professional organizations; practitioners such as nurses, technicians, dieticians, social workers, surgeons and physicians; independent dialysis and transplant facilities; large dialysis organizations; hospitals; medical equipment suppliers; ESRD Networks; state representatives; the Renal Leadership Council (RLC); as

11

well as the CMS and other federal agencies such as the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health (NHI).

Phase I of the Coalition work has been completed with the development and initial dissemination of tools and resources and a national kidney community response plan to help patients, facilities, emergency responders, and coalition members plan for, and respond to, emergencies and disasters.

CMS will assume the administrative coordination lead as the Coalition moves into Phase II. Coalition activities will focus on making individuals with ESRD and the state and local response workers aware of the tools and materials available, as well as testing and refining the national kidney community response plan. ESRD Networks, healthcare practitioners, dialysis facilities, industry, and patient representatives will play a critical role as the Coalition moves into Phase II, and in the event of a disaster, will be at the forefront of implementation of the response plan.

CMS has a number of additional activities including education campaigns, and contractual (e.g., ESRD Networks) and regulatory (e.g., proposed ESRD Conditions for Coverage) changes underway to supplement the work of the Coalition, as well as activities to ensure all Medicare beneficiaries have access to health care services in the event of a disaster, including the possibility of a flu pandemic.

For more information and links to CMS disaster planning activities and resources, please visit http://www.cms.hhs.gov/Emergency/. The National Kidney Foundation is host of a clearing house of Coalition activities that can be accessed at www.kidney.org/help.

- / Pre Disaster Emergency Planning

12

Dialysis Facility(LDO, Independent, or Hospital Based)

Community Disaster Planning Committees

Local Health Departmen

Utilities and Services

LDO Corporate Resources

Radio & TV Stations

Forum of ESRD Networks

Other Dialysis Units

Hospital Acute Services

Center for Medicare & Medicaid Services (CMS)

Adequate planning extends far beyond the walls of your dialysis facility!

Plan – Test – Re-Assess your Plan (Consider making plan A, B, and C)

13

Transportation

Heartland Kidney Network

Supply Vendor

? !Need Help Go Here

National Emergency Hotline: 1-888-33KIDNEY or 1-888-335-4363

Mobile Device: hh.nephron.com

:Large Dialysis Organization HotlinesDaVita: 1-800-400-8331Fresenius: 1-800-626-1297DCI: 1-615-327-3061

Heartland Kidney NetworkPatient toll-free number: 1-800-444-9965Phone: 816-880-9990Fax: 816-880-9088Website: www.HeartlandKidney.org

Forum of ESRD Networks866-901- ESRD (866-901-3773)

.Kidneydisasters org

:// . / /http kidney org help

:Tip This would be a good page to Xerox and then post on

your bulletin board for quick reference!

Dialysis Facility Managers may want a copy of this at home

:Encourage patients to

• Identify themselves as dialysis patients to every disaster volunteer they come in contact with

• Keep a list of their medications with them• Know their dialysis orders• Know their dry weight• Have a copy of the emergency renal diet at home• Review and understand the facility disaster plans• Be prepared at home to be self-sufficient for at least three days• Monitor the weather forecast• Know how to contact Heartland Kidney Network, the LDO, etc.

:Encourage dialysis staff members to

• Monitor the weather forecast • Actively plan with the community for disasters and emergencies• Consider joining emergency dialysis relief teams• Be prepared at home to be self-sufficient for at least three days• Know how to contact Heartland Kidney Network, the LDO, etc.

DialysisElectrical Power Company: Did You Know?

• There are 392,023* patients in the United States relying on hemodialysis or peritoneal dialysis (kidney) machines to sustain their lives.

• Some patients have hemodialysis machines in their homes and perform their own treatments.

• Many dialysis facilities treat hundreds of patients simultaneously.

• Dialysis facilities are not necessarily connected to a hospital – many are free standing businesses.

• Many dialysis facilities do not have electrical power generators in case of power outage.

How Can You Help?• Develop a relationship with the dialysis centers serving

your area.

• Post a list of local dialysis facilities so that electrical transmission distribution personnel will know where they are located. (A list is available from Heartland Kidney Network www.HeartlandKidney.org)

• Participate in disaster planning exercises involving the dialysis providers and your community.

Thank you!

*2001 United States Renal Data System

DialysisWater Service Company: Did You Know?

• There are 392,023* patients in the United States relying on hemodialysis (kidney) machines to sustain their lives? Some patients have hemodialysis machines in their homes.

• Each dialysis machine uses approximately 120 liters of water per treatment - which must be specially purified (chlorine and other elements removed)! Exposure to chlorine can cause injury or even death to dialysis patients.

• Many dialysis facilities treat hundreds of patients simultaneously.

• Dialysis facilities are not necessarily connected to a hospital – many are free standing businesses.

How Can You Help?• Develop a relationship with the dialysis centers serving your

area.

• Post a list of local dialysis facilities in your area so that personnel will know where they are located. (A list is available from Heartland Kidney Network at www.HeartlandKidney.org)

• Please notify dialysis facilities when the chlorine/chloramine concentrations are changed and/or when water supplies are altered!

• Participate in disaster planning exercises involving the dialysis providers and your community.

Thank you!

*2001 United States Renal Data System

You Need to Know About Emergency Preparedness for Individuals with Kidney Disease

Kidney failure, often called End Stage Renal Disease or “ ESRD” , is a life threatening condition. There are nearly half a million individuals with kidney failure in the U.S. Individuals with kidney failure require either medications to prevent rejection of a transplanted kidney, or regular repeated dialysis treatments to clean the blood supply, as frequent as three to four times a week, if they have not had a transplant. Missing even a few treatments can result in severe illness or even death for an individual with kidney failure needing dialysis. A Kidney Community Emergency Response Coalition has been formed that includes public and private partners representing kidney care medical professionals, dialysis and transplant facilities, vendors that supply services and medications, patient representative groups, ESRD Networks, and federal, state, and local emergency responders. The Coalition created tools and resources to help providers and federal, state, and local emergency responders develop plans to help meet the life saving medical care needs of individuals with kidney failure.

, You can access information on Coalition activities and the tools and resources that are available at . . /www kidney org help.

, In the event of a disaster call 1-888-33 (1-888-335-4363)KIDNEY for information on how to .obtain the service or assistance you need

Basic Requirements for Dialysis Treatment

• Space to do the treatment

• Electrical Power to run the equipment (if electricity is not available, one machine would

require a 1.65KW size generator – an average facility has 16-20 machines and a water treatment system will require at least a 50KW generator)

• Dialysis machines

• Potable water for use in the treatment (each treatment requires a minimum of ~100 gallons

of pressurized water)

• Water treatment equipment (Carbon filtration & either reverse osmosis or deionization);

• Supplies (dialyzers, blood lines, saline, medications, etc.)

• Personnel qualified to perform dialysis

• ’ A physician s prescription for dialysis and medical records to support the treatment

• A hospital or other similarly equipped system and a means to transport a patient if

complications occur while providing dialysis

– DO YOUR PART PLAN AHEAD

While the national emergency response plan can assist state and local efforts, because medical care and emergency response occurs locally, it is essential that a coordinated state and local emergency response plan is in place to meet the critical health needs of individuals with kidney failure. Waiting for an emergency or disaster to occur is too late! Dialysis is dependent on the availability of power, gas, supplies, and water – commodities that, without proper planning, are difficult to access in the event of an emergency or disaster. Individuals with kidney failure need to know ahead of time what they can do to maintain their health during an emergency and disaster, such as minimizing fluid intake and restricting their salt and potassium intake, eating an “ emergency diet” , and planning ahead so that they have the information they need and know how to find care. The following are a few suggestions and information on how to obtain more comprehensive information to assist in your planning.

:Providers Need To

• Identify a leader, and a back-up, who can head the facility’ s emergency preparation and

response activities

• Make a plan to secure and protect your equipment, supplies, and records

• Create a list of emergency phone numbers for your staff and patients

• Have an emergency plan for your patients (as example, provide them with a copy of their

last “ run” sheet, a list of their medications, an emergency diet, and facility or corporate phone number(s) in a plastic sealed bag)

• Report to your ESRD Network if your facility is “ open” (e.g., able to provide dialysis in a

safe environment) or “ closed.” In the event of a disaster,

For comprehensive planning information for providers, visit:www.cms.hhs.gov/ESRDNetworkOrganizations.

:Individuals With Kidney Failure Need To

• Make an emergency supply kit.

• / Up date medicine allergies list and keep it with you at all times.

• Create a personal evacuation plan - plan to evacuate early when warranted.

• Talk to the health care team about the facility emergency care plan, including how to

contact the facility in the event of an emergency or disaster, where back-up care can beobtained, and how to get copies of vital medical records. Many facilities have toll freenumbers to call for assistance.

• Keep a record of the facility name (make sure it is the official name because many

facilities have similar names), physician name, and emergency contact information and keep them with all other important information.

• Collect important personal information and put it together in something water proof

• - - Give kidney care team out of state contact numbers (if available).

• Get a copy of the emergency diet and keep emergency supplies on-hand.

• - Plan for back up transportation to dialysis.

• Get a list of dialysis facilities in the area.

• ’ Follow your physician s advice regarding diet & water, when possible during a disaster.

• Follow the same frequency for dialysis services when possible. Services may be harder to find

so don’ t wait too long to start looking. Following the emergency diet can help if you can’ t get to services for a day or two.

For comprehensive planning information for individuals with kidney failure, visit:Medicare.gov/Dialysis/Static/Publications.asp .

, , :Federal State and Local Emergency Responders Need To

• ’ Require State Emergency Management Association s to include provisions for individuals with

kidney failure in all plans, and involve ESRD Networks and dialysis facilities in all planning efforts.• List dialysis facilities as high priority locations for restoration of all services such as power;

water, and phone services.

• Designate dialysis facility as high priority for emergency services such as generators; fuel; and

tanker water.

• Give priority to dialysis personnel for limited supplies such as gasoline and housing.

• Establish clear contacts in each response area and make contact information known to

ESRD Networks and dialysis facilities.

• Encourage early evacuation of individuals with kidney failure if they are on dialysis, with

appropriate family members (where possible). Since services are needed on a frequent basis, the individual should be triaged, provided urgent care, and evacuated to a location where services can be provided frequently in a safe environment.

• Facilitate delivery of supplies to dialysis clinics.

• Provide security assistance to protect dialysis facility staff, emergency generators, and fuel

used to run the dialysis equipment.

• Allow to cross roadblocks and travel during curfews patients and staff with appropriate

identification in order to get to and from dialysis clinics.

• Provide alternate sites for treatment if dialysis clinic operations are impacted by the

disaster - work with dialysis providers, state agencies and the End Stage Renal DiseaseNetwork organizations (www.esrdnetworks.org) in establishing appropriate locations.

• Routinely screen for kidney failure when individuals seek shelter in disasters. Add: “ Do you

require dialysis?” and “ Do you have a transplanted organ?” to all screening tools.

• Recognize that individuals with failed kidneys have unique medical needs and will need to limit

fluid intake and use caution in consuming foods high in salt and potassium (such as MREs) during periods of limited access to dialysis; as example, public service announcements may need to be edited to recognize these restrictions.

• Ask shelters to group individuals needing dialysis in a specific area of the shelter, and to

consider arrangements for transportation to dialysis in transferring these individuals to another shelter.• Designate a few shelters as the “ go to” locations for dialysis patients to make transportation

to dialysis treatment easier. These shelters can also be used for others.

– REMEMBER PLAN AHEAD

Being without dialysis as few as three or four days could result in illness or even death for . individuals with kidney failure (Source CMS email to Networks)

September 20, 2005 Centers for Disease Control and Prevention Fact Sheet

’Technical Considerations when Bringing Hemodialysis Facilities Water Systems Back on Line after Hurricane Katrina

These directions are for use if the building has not been flooded, and after utilities have been restored, the physical facility is in operational condition, and adequate water flow and pressure are available, although source water may be subject to a “ boil water alert.” If the facility was flooded, please see the CDC guidelines for recovery of a flooded building at http://www.bt.cdc.gov/disasters/floods/

Water Treatment System

1• Flush all pretreatment equipment to drain for at least 30 minutes to remove the stagnant water from the system. 2• Test the level of free chlorine and chloramine in the building’ s source water (expect it to be higher than normal). 3• Test chlorine and chloramine after the primary carbon tank to verify that the water is <0.5ppm free chlorine, or <0.1ppm chloramine.

4 • If chlorine or chloramines after the primary carbon tank 0.5 ppm or 0.1 ppm,≥ ≥ respectively, promptly change the primary carbon tank, or for systems with a secondary carbon tank, test the levels after the secondary carbon tank. 5 • If chlorine and chloramine are below these levels (0.5 ppm or 0.1 ppm), turn on the reverse osmosis (RO) machine. 6• Flush the distribution system (to drain if possible). 7• Disinfect the RO and the distribution system and rinse. Test for residual disinfectant levels to ensure proper rinsing. 8• Replace all cartridge filters. 9• Compare the product water quality readings to your historical data. A significant difference could mean that the RO membranes are damaged, or the quality of the incoming water has drastically decreased. (see note below) If the total dissolved solids (TDS) are greater than 20% higher than the historical readings, consider using the deionization (DI) tanks as a polisher on the product water, followed by an ultrafilter to minimize microbial contamination. 10• Increase frequency of monitoring:

0o Check chlorine/chloramine hourly 1o Verify hourly that the product water quality is acceptable. 2o Monitor water cultures and endotoxin at least weekly. If possible, test for endotoxin on site daily.

11• Draw representative water cultures and endotoxin tests as soon as possible. If possible to test for endotoxin on site, do this before treating patients; report the results to the facility’ s Medical Director. 12• Anticipate an increased level of particulate matter in the water. Monitor the pressure drop across pretreatment components and back-flush as necessary. 13• Plan on re-bedding the carbon tanks as soon as possible. 14• Send a sample of product water for an AAMI analysis as soon as is practical.

1• Clean the RO membranes as soon as is practical.

Dialysis Machines

1• Chemically disinfect the dialysis machines and rinse. Test for residual disinfectant levels to ensure proper rinsing. 2• Bring up the conductivity and “ self test” the machines to verify proper working condition. If a machine fails the “ self test,” perform needed repairs prior to using that machine.

Note

If the product water TDS is high and the percent rejection is in line with historical performance, then the RO membranes are most likely good, but the feed water may have a higher than usual level of contaminants. DI polishing will help cope with the extra burden in the feed water. If the product water TDS is high and the percent rejection is lower than historical values, then the RO membranes are probably bad and should be replaced promptly. DI polishing may or may not be needed once the RO membranes are replaced.

This fact sheet was prepared in collaboration with the Food and Drug Administration and the Centers for Medicare and Medicaid Services.

Hemodialysis Water Treatment References

Northwest Renal Network document Monitoring Your Dialysis Water Treatment System http://www.nwrenalnetwork.org/watermanual.pdf Association for the Advancement of Medical Instrumentation, Recommended Practices for Dialysis Water Treatment Systems (RD 52 and RD 62) http://aami.org/publications/standards/dialysis.html

Other Resources

The Renal Patient Evacuation Communicator (treatment and care information)Care Plan Solutions, Inc., PO Box 4156Topeka, Kansas 666041-888-771-6441 or 1-785-267-6441

Guidelines for Dialysis Care Providers on Boil Water Advisories http://www.cdc.gov/ncidod/hip/dialysis/boilwater_advisory.htm

Water Related Emergencies http://www.bt.cdc.gov/disasters/watersystemrepair.asp

Tips about Medical Devices and Hurricane Disasters http://www.fda.gov/cdrh/emergency/hurricane.html

Medical Devices that Have Been Exposed to Heat and Humidity http://www.fda.gov/cdrh/emergency/heathumidity.html

Medical Devices Requiring Refrigeration http://www.fda.gov/cdrh/emergency/refrigeration.html

Fact Sheet: Flood Cleanup - Avoiding Indoor Air Quality Problems http://www.epa.gov/iaq/pubs/flood.html

NIOSH Hurricane Katrina Response: Storm and Flood Cleanup http://www.cdc.gov/niosh/topics/flood/

OSHA Fact Sheet http://www.osha.gov/OshDoc/data_Hurricane_Facts/Bulletin3.pdf

American Institute of Architects: Procedures for Cleaning Out a House or Building Following a Flood http://www.aia.org/liv_disaster_floodproc

For more information, visit www.bt.cdc.gov/disasters or call CDC at 800-CDC-INFO (English and Spanish) or 888-232-6348 (TTY).

Resource Request Form Dialysis Facility

We are happy to send you additional copies of resource materials upon request as supplies last. Please fill out the order form and fax it to:

Heartland Kidney Network

: 816-880-9088 : .Fax Attention Quality Improvement Department

Title of Resource Check to request item

Basic Facts About Kidney Disease And Treatment (CMS)CMS Press Release dated July 26, 2006Disaster Preparedness: Is Your Unit Ready? By Caroline S. Counts (article)Emergency Preparedness Guidelines for Water Treatment Systems (article)Emotional Trauma Associated with Renal Disease and Natural Disasters (article)Patient Demographic and Hemodialysis, Peritoneal Dialysis, & Renal Transplant Patient Triage Assessment Save a Life What You Need to Know AboutEmergency Preparedness for Individuals with Kidney Disease (CMS)Technical Considerations when Bringing Hemodialysis Facilities’ Water Systems Back on Line after Hurricane Katrina (CDC)Water Department educational sheet

Note: Other resources are available – feel free to ask us for other items that you may need.

Name:________________________________________________________________________________

Dialysis Facility: ______________________City: __________________State: _________ Zip: _______

Phone: ________________________________ Fax: __________________________________________

Email: ________________________________________________________________________________

Comments about this booklet “ What if a Disaster Happens Here?(for the renal community) _____________________________________________________________________________________

_____________________________________________________________________________________

What did you like about the booklet? _____________________________________________________

What didn’ t you like about the booklet? ___________________________________________________

How will you intend to use the information provided? ________________________________________

Do you think the information provided will help you assist the renal community in times of disaster or emergency? Yes No

If you answered “ no” , please state why not? ______________________________________________

Suggestions for future educational material topics: __________________________________________

Thank you

An Example of Family Disaster Planning

Red Cross/CMS Information postings used during Hurricane Katrina

DIALYSIS PATIENTS

TRYING TO LOCATE A FACILITY TO OBTAIN DIALYSIS SERVICES?

CALL – Any one of these numbers for ,help getting dialysis services , transportation to dialysis and with getting dialysis supplies and renal

.medications

If you were previously seen in a facility that was part of one of these organizations, it is best to call that organization’ s number. They can get information from your electronic medical record, but any organization will help you, even if your facility was not part of one of the corporations listed. You can also call the End Stage Renal Disease (ESRD) Network (under contract with the Center for Medicare & Medicaid Services, CMS) that will provide the same assistance.

TOLL FREE PHONE NUMBERSTO ASSIST YOU IN GETTING DIALYSIS

DaVita - 1.800.400.8331

FMCNA - 1.800.626.1297

RCG - 1.888.724.4242

DCI - 1.800.969.4438 or 615.327.3061

Trying to find a family member that has kidney

disease?

CALL FOR HELPAll Across the Country, End Stage Renal Disease (ESRD) Networks (under contract with the Centers for Medicare & Medicaid Services - CMS) are tracking where individuals are getting dialysis services.

To check for information on the individual you are trying to locate, call any one of the 18

ESRD Networks.

ESRD Network Information: ESRD Network Information:

ESRD Network Information: ESRD Network Information:

You can obtain a complete listing of

Contact information for the 18 ESRD Networks at http://www.esrdnetworks.org/

End Stage Renal Disease (ESRD) Conditions for Coverage (Medicare Regulations)

§ 405.2140 Condition: Physical environment.

(d) Standard: emergency preparedness. Written policies and procedures specifically define the handling of emergencies, which may threaten the health or safety of patients. Such emergencies would exist during a fire or natural disaster or during functional failures in equipment. Specific emergency preparedness procedures exist for different kinds of emergencies. These are reviewed and tested at least annually and revised as necessary by, or under the direction of, the chief executive officer. All personnel are knowledgeable and trained in their respective roles in emergency situations.

(1) There is an established written plan for dealing with fire and other emergencies which, when necessary, is developed in cooperation with fire and other expert personnel.

(2) All personnel are trained, as part of their employment orientation, in all aspects of preparedness for any emergency or disaster. The emergency preparedness plan provides for orientation and regular training and periodic drills for all personnel in all procedures so that each person promptly and correctly carries out a specified role in case of an emergency.

(3) There is available at all times on the premises a fully equipped emergency tray, including emergency drugs, medical supplies, and equipment, and staff are trained in its use.

(4) The staff is familiar with the use of all dialysis equipment and procedures to handle medical emergencies.

(5) Patients are trained to handle medical and non-medical emergencies. Patients must be fully informed regarding what to do, where to go, and whom to contact if a medical or non-medical emergency occurs.

(§§ 1102, 1871, 1881(b), Social Security Act; 42 U.S.C. 1302, 1395hh, 1395rr(b))[41 FR 22511, June 3, 1976. Re-designated at 42 FR 52826, Sept. 30, 1977, as amended at43 FR 48952, Oct. 19, 1978; 45 FR 24839, Apr. 10, 1980; 52 FR 36934, Oct. 2, 1987; 60 FR 48043, Sept. 18, 1995]

Heartland Kidney Network

7505 NW Tiffany Springs Parkway, Suite 230Kansas City, Missouri 64153

Phone 816-880-9990 Fax 816-880-9088HeartlandKidney.org