We recognize that many patients with arthritis and other rheumatic diseases have been personally affected by the recent Hurricane and its aftermath. We know that patients with arthritis and families of patients with arthritis may be especially affected and have specific questions.
The Johns Hopkins Arthritis Website strives to provide current information on arthritis treatment. We have developed a series of Questions and Answers that we hope will help to provide some initial guidance for patients and families and will serve as a source to direct you in your search for additional information. We recognize that these questions just scratch the surface for the unique concerns of each individual. We will strive to keep this information up-to-date over the coming weeks and months, but understand that the situation will be rapidly changing over the coming period of time.
We have developed a specific section of our patient message board titled Katrina Impact on Arthritis Patients for those affected by the storm that will hopefully serve as a forum for patients and families to pose questions and to offer advice to one another. We will monitor this message board on a regular basis and will hope to offer additional general answers based on your concerns.
Many patients have been evacuated from areas affected by the storm, often without their medications or medical records and to distant areas where the health care systems are different. Many physician offices, including rheumatologists, and hospitals have been closed and cannot be contacted. Transportation is difficult for many people. Electricity and phone service have been affected leading to further difficulties in communication. All of these factors as well as countless others may have an impact on your ability to manage your arthritis symptoms.
- What should I do if I cannot locate my rheumatologist?
- What is I’ve lost power and my medication is not cold?
- What should I do if I take Enbrel and Humira?
- What should I do if I receive Remicade infusions?
- I am a clinical trial participant; what should I do?
- What should I do if my arthritis symptoms are beginning to flare?
- What should I do if I am taking several medications for my rheumatoid arthritis including prednisone, methotrexate, and Enbrel/Humira/Remicade and am running a fever?
- What should I do if blood tests are needed?
- I have been receiving medication delivered to my house; what should I do if my address no longer valid?For Rheumatologists:
- I am a rheumatologist and seeing patients who have been relocated. Where can I find information on how to obtain their medical information, insurance information, etc?
- I am a rheumatologist who has a practice in an affected area but have been evacuated. What should I do if my office and medical records are not accessible?
- A Letter from the American College of Rheumatology Regarding Patient Referrals to Local Rheumatologists
- Links for additional resources
Questions and Answers
Q:What should I do if I cannot locate my rheumatologist?
A:We are aware that several rheumatologists and their staff in the affected areas have been displaced by the storm with their offices, clinics, hospitals, and medical records currently not accessible. You should try to first call your rheumatologist to obtain information. If you are unable to locate your rheumatologist, or if you have been relocated to a new area, you should contact:
- the local Arthritis Foundation in the area http://www.arthritis.org/communities/Chapters
- or the American College of Rheumatology http://www.rheumatology.org/directory/geo.asp for the name and contact information for rheumatologists in the area.
It is very important to tell the office of a new rheumatologist that you have been evacuated from a storm-affected area as well as the medications you are receiving and any current problems that you are having. As many of you know, rheumatology practices may be very busy with their current patients. We hope that rheumatologists may be able to make accommodations to absorb you as a new (and hopefully temporary) patient into their practices.
You may find it useful to use forms developed by the American College of Rheumatology to record your rheumatology history if you are seeing a new rheumatologist:
If you are having emergent or significant medical problems, such as fever or significant worsening of your arthritis condition, you should be evaluated in an emergency room setting.
A:Medications like Enbrel and Humira are meant to be kept cold. If your medication has gotten warm, it is no longer stable for your use and you should not use the medication. If possible, you should contact your pharmacy to order new medication. If you have been relocated to a new area, you should first contact the patient assistance lines for Enbrel or Humira (1-888-4-ENBREL or 1-800-4-HUMIRA) who will direct you to the next steps. It is important to have a place to refrigerate your replacement medication and to transport the medication on ice/cooling blocks if you must move from place to place.
The FDA has important additional details concerning biological products http://www.fda.gov/cber/weatherimpact.htm
Additional information concerning nonbiologic drugs is also available at http://www.fda.gov/cder/emergency/default.htm
Other questions concerning stability of medications:
The FDA has posted important general information concerning biological and nonbiological medications.
A:You should first contact the toll free patient assistance lines for your medication:
- Enbrel: 1-888-4-ENBREL (888-436-2735)
- Humira: 1-800-4-HUMIRA (800-448-6472)
They will be able to direct you to the next steps such as supplying new contact information, reviewing authorization numbers, obtaining replacement medication, etc.
A:Many physician offices, rheumatology practices, infusion centers, and hospitals have been affected by the storm and may no longer be able to provide infusion services to you. If you cannot locate your rheumatologist or infusion center, it may be necessary for you to be seen by another rheumatologist in order to get started back on your infusions. (See I cannot locate my rheumatologist above).
If you are a patient or caregiver in need of access to REMICADE and are experiencing difficulty due to Hurricane Katrina, please contact AccessOneSM at 888-222-3771 for further information to assist you in continuing your treatment.
Similarly, if you are a healthcare provider experiencing difficulty in accessing and administering REMICADE, please also contact AccessOneSM at 888-222-3771 for further information to assist you.
A:Patients who are in clinical trials should first attempt to contact their physician or clinical trial site. If the physicians office is not available because of the storm, you should try to locate the name of the pharmaceutical sponsor of the trial. This may be located on your copy of the informed consent. We recognize that many of you may not have this paperwork with you. You may be able to locate the clinical trial in which you were participating at http://www.clinicaltrials.gov or at http://www.Centerwatch.com. These may list other sites in your area that are conducting the clinical trial in which you were enrolled that may be able to accommodate you or provide additional information. You may wish to contact the pharmaceutical sponsor for additional directions.
It is very important to let any health care professional that you may see know that you are involved in a clinical trial of an investigational medication, and if possible the name of the medication.
A:If you are having emergent or significant medical problems, such as fever or significant worsening of your arthritis condition, you should be evaluated in an emergency room setting.
If your symptoms are beginning to flare because you have not taken or do not have your medication, it will be important for you to seek care by a physician familiar with the treatment of your condition. If you are in a new area, you may be able to be evaluated by an internist, family practitioner, or medical clinic until you can locate a rheumatologist. It is important to tell any physician the medications you are currently taking for your arthritis.
A:You should seek medical attention immediately.
Medications such as prednisone, Enbrel, Humira, and Remicade all increase susceptibility to infection. Crowded living conditions such as experienced in shelters, poor nutrition, and exposure to contaminated water are all additional risks for exposure to bacterial infection and other unusual infections. It is very important to be evaluated quickly. You should notify the health care provider who is seeing you of your underlying medical conditions, as well as any medications that you are taking or have taken in the past few months as there may be lasting effects on the immune system.
Because many doctors who you may see in an emergency situation may not be familiar with your condition or your medications, it is very important to provide this information to them. You may be able to find specific information regarding side effects and can print these out for your medications to provide your doctor.
- Some information regarding medication side effects can be found on our website:
- More detailed information regarding monitoring for arthritis medication side effects can be found at:
A:What should I do if blood tests are needed? I have been taking medications for my rheumatoid arthritis including Methotrexate. My doctor checks my blood tests every 6 weeks but I have been relocated.
A:People taking certain medications to treat arthritis have regular monitoring for side effects. These should be done on a regular basis in order to avoid toxicity. These lab tests may need to be ordered by a new health care provider at a clinic or other facility. You may be seeing a new doctor who is not familiar with your medication or monitoring for these side effects.
- Some information regarding medication side effects can be found on our website:
- More detailed information regarding monitoring for arthritis medication side effects can be found at: http://www.rheumatology.org/publications/guidelines/ra-drug/ra-drug.asp?aud=mem
A:If you have previously been receiving medications at your house, you should notify the sender of the new address (e.g. especially medications requiring refrigeration such as Enbrel or Humira at toll-free numbers above). Be sure to notify the place where you are staying of the need to keep this medication refrigerated.
The U.S. Postal Service is reconnecting displaced and evacuated Hurricane Katrina victims with their mail. Hurricane victims in areas without telephone service or internet access should go to the nearest post office, complete a change-of-address form, and submit it to a postal retail associate at the counter or mail it. For more information visit http://www.usps.com or call 1-800-ASK-USPS (1-800-275-8777). People who are registered and have been housed in shelters should use the Shelter Address listed as their Current Mailing Address.
A:We know that you can appreciate the special concerns of arthritis patients affected by this emergency situation and the difficulties that may take place in the coming weeks especially with obtaining medical information. Many rheumatologists and health care facilities from affected areas have also been displaced. We recommend that you contact the American College of Rheumatology (http://www.rheumatology.org) with your specific concerns so that they may develop appropriate guidance. Additionally, the ACR has compiled a resource page and added a discussion board for rheumatologists concerning the storm and relief.
Q: I am a rheumatologist who has a practice in an affected area but have been evacuated. What should I do if my office and medical records are not accessible?
A:We recommend that you contact the American College of Rheumatology (http://www.rheumatology.org) to notify them of your location, and the local medical society where you are currently located.
Dear ACR Member and Arthritis Foundation Community,
The events surrounding Hurricane Katrina have called attention to the needs of the thousands of Americans affected by the tragedy. Among the thousands of displaced citizens are people with arthritis, who under the most difficult of circumstances must cope with the pain and limitations of arthritis, the loss of medical care and the loss of access to needed arthritis medication. As leaders of the arthritis community, we are dedicated to ensuring that coordinated help is offered to people with arthritis who have also been affected by the hurricane. Many of these people have been displaced to communities all over the country, and we intend to reach out to them in their time of need.
A key role we can play is to provide information and immediate referral for those affected to a local rheumatologist for appropriate medical care and treatment with prescriptions or other therapies. One immediate need may be the re-establishment or provision of arthritis care and vital prescription medication for those with arthritis. This is of particular concern for individuals with disease flares or those on disease modifying treatments whose medication may be interrupted.
As a result, we ask the following:
- As a rheumatologist, if you are willing to see displaced citizens with arthritis outside your normal patient base, please contact your local Arthritis Foundation chapter to be placed on a referral list. This will be a distinct referral list containing only those willing to see short-term, immediate displaced hurricane victims and separate from any current permanent referral list the chapter may have in your community. Rheumatologists may find the contact information for the nearest local chapter by going to www.arthritis.org and typing your zip code into the zip code locator on the left of the page or by clicking on the following link taking you to a chapter map:
- After placement on the referral list, rheumatologists will be contacted as need arises directly by the patient or the Arthritis Foundation office. The Chapter will follow-up at periodic intervals to let those on the list know how extensively it may have been provided to others, including to national coordinating medical authorities.
- Because many displaced citizens may not have adequate health insurance, chapters and rheumatologists may provide information from the following Web link that serves as an industry-wide patient assistance program for prescription medication for people unable to afford medication: http://www.pparx.org. Also, please recommend other local resources that you may be familiar with. People who may already be on prescription medication or are already in the health care system may need appropriate follow-up and newly written prescriptions.
Local Arthritis Foundation chapters also have medication tips available for displaced patients. The ACR has created a resource area of its Web site devoted to hurricane resources for rheumatologists both in the affected areas and around the country, including a forum where members can post messages: http://www.rheumatology.org/katrina.asp.
There will be many months of recovery for the areas affected by the hurricane. We thank you for any efforts you may be able to provide in this time of national need.
Elizabeth A. Tindall, MD – President, American College of Rheumatology
John H. Klippel, MD – President & CEO, Arthritis Foundation
From Medscape, Hurricane Katrina: Surviving the Aftermath
From Medscape, For Emergency Housing Information:
American Red Cross: http://www.redcross.org/where/chapts.asp
From American Pain Foundation, Emergency Withdrawal From Pain Medicines
Louisiana Disability Information Resource
From the US Government, Replacing Your Vital Documents
United States Department of Health & Human Services: Hurricane Katrina Resource Page
From the Arthritis Foundation, Tips for Managing Arthritis in the Wake of Hurricane Katrina