Hurricane Katrina HIV-Related Information

September 15: Web links and telephone numbers for HIV-relevant information, especially on medical care.

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Besides the thousands who have been killed, about a million people have had to leave their homes, and most cannot go back soon -- if ever. Hundreds of thousands have lost their jobs and income, and many have lost papers and medicines, or are in other states where their health coverage might not apply. An estimated 8,000 of those who had to evaculate have HIV. Here are some Web and telephone starting points for finding HIV-relevant information, especially but not only on medical care; we also include some non-HIV sites. We will update this list; for the current version, see www.aidsnews.org/katrina/ .

Even if there is a search function on the Web site, it is often better to scan through all the information to find what is useful to you.

For Patients and Healthcare Professionals

http://www.nmac.org - The National Minority AIDS Council (NMAC) home page has a link to "detailed medical, legal, and social information and resources geared to those living with HIV/AIDS impacted by Katrina, and those who are assisting, or wishing to assist, them." Note that there are currently five pages of hurricane information, and you need to go to the bottom of each page to find the links to the other pages.

http://www.centerforaids.org/CFA_Katrina.info.pdf - Houston-area Resource Guide for HIV+ People Displaced by Hurricane Katrina, compiled by the Center for AIDS Information and Advocacy, Houston.

http://www.thebody.com/katrina.html - See The Body's own coverage, the Snapshots series - also the HIV links, mainly medical.

http://poz.com/katrina/index.shtml - POZ Magazine's Katrina page.

For Healthcare Professionals and Patients

http://www3.niaid.nih.gov/news/inthenews/katrina.htm - excellent government site for Federal medical information, including toll-free hotline for physicians or patients to reach infectious-disease experts.

http://64.177.16.246/aahivm_blog/
or
http://www.aahivm.org - The American Academy of HIV Medicine has created an emergency blog for Gulf Coast coverage. People are using it to post documents from government agencies and credible organizations. Much of the information is mainly for professionals or relief workers, but patients may find it useful as well. You can get to the blog from a link on the home page (the Web link above).

You will need to register for the emergency blog (which was hacked in early September and had to be revised). Registration is easy; you need to make up a user name and password, and supply your full name, and an email address. After you register, you will be able to choose among seven different blogs (so far). We suggest looking through all of them to find information you may need.

Currently new users should be aware of one glitch: just after you register, it may not be clear how to proceed to the information. In this case, click the title in large white type under the picture -- which is a Web link, although as of today it does not look like one.

-> Volunteer needs by clinics, hospitals, and other medical facilities: If you need volunteer HIV physicians to help with disaster relief, contact AAHIVM by sending an email to howard at aahivm dot org (reformat the email address of course).

http://www.idsociety.org/HIVMA_Template.cfm - The HIV Medicine Association has relevant links.

Other HIV-Related

http://www.tdh.state.tx.us/hivstd/meds/news.htm - Texas, with tens of thousands of refugees from New Orleans and elsewhere, quickly set up emergency procedures, including emergency application to ADAP for persons receiving ADAP in other states who are now in Texas due to the disaster. It also extended the time limit on emergency prescription refills (so that treatment will not be interrupted because final approval has not come through) from 72 hours to 30 days, except for Schedule II controlled substances.

For evacuees arriving in Massachusetts, the state is planning to extend ADAP eligibility to those temporarily residing there. Medical arrangements may be made on arrival at Camp Edwards, or individuals may call the Community Research Initiative of New England, 1-800-228-2714, for information about applying to the Massachusetts HIV Drug Assistance Program. For general information about HIV/AIDS services in Massachusetts, call the AIDS Action Committee hotline at 1-800-235-2331.

For other states, check the sites of the state government and of local HIV/AIDS organizations. Lists of major organizations by state can be found by starting at the links above, especially www.nmac.org and www.aahivm.org

Much work remains to be done to provide access to medical care to persons forced from their homes by disaster. Medicaid, Medicare, ADAP, and the various private insurance programs are all relevant. AAHIVM, HIVMA, and IDSA (the Infectious Diseases Society of America) wrote a joint letter to Mark McClellan of the Center for Medicare and Medicaid Services, urging it to waive "certain Medicare and Medicaid requirements to allow providers in affected areas to care for patients free from the many conditions of participation in these federal programs." (The full text of the letter is at http://www.idsociety.org/HIVMA_Template.cfm .) Note: See "Simplified Medicaid Paperwork -- But..." below.

Also do your own Web searches at www.google.com or elsewhere, such as
"hurricane katrina" HIV

Many AIDS sites are starting emergency information pages.

Note on Web search: You can usually find an entire document, such as a government press release, or a newspaper article that has been publicly discussed, if you have an exact quote of a short excerpt unlikely to appear in other documents. Usually one line or less is enough. At www.google.com, search for the excerpt, in quotation marks.

Other Hurricane Disaster Resources

These are not HIV-specific, but people may want to know about them.

Reconnecting Families and Friends

A major complaint during the evacuation of New Orleans is that officials did not set up a system to help family members reunite when they were separated; many still do not know where their relatives are. Since the disaster, many private organizations have helped fill the gap by offering free, automated systems. More than 30 different "Katrina missing person sites" are currently listed at http://msnbc.msn.com/id/9144525/ . Since there seems to be no central site, people needing to reconnect should probably use many of them.

What might be the best missing-person service does not require a computer. Air America Radio offers a public voicemail system (1-866-217-6255) that will remain until the crisis ends. It lets you file a message under your phone number -- whatever number people know as yours, whether or not that number still works. Then anyone who calls the public voicemail service and searches for your number will hear your message. (Note: if someone calls your telephone number directly, they will NOT hear the message you left on this service. They must call the service and search for your phone number there.)

Anyone leaving or receiving a message can use any telephone for a toll-free call; all they have to know is the phone number of the service, 1-866-217-6255. Most people will remember their own phone number even if they have lost all their records -- and their friends and family will have their number. All that's needed in a disaster area or refugee center (or any other location) is access to any working telephone (cell, landline, or satellite) for a couple minutes, and the number above. Note: You will be asked for a 4-digit PIN when leaving a message; this is any 4-digit number that you must save and remember in case you want to change your message later. This prevents anyone else from maliciously changing or deleting it.

We tested this system and it worked perfectly. It is provided in conjunction with VoodoVox, a voicemail service for high-call-volume industries, so it can handle the volume of calls. The huge advantage is that no computer is required; also, this system requires far less time on the equipment (the telephone) than the computer-based system require.

Simplified Medicaid Paperwork -- But...

On September 9 the U.S. Centers for Medicare & Medicaid Services announced that paperwork would be significantly simplified for persons granted "evacuee status." This should especially help those have lost their records. And "Host states must extend the expedited application process to evacuees who may be newly eligible because of new economic circumstances created by the hurricane..." For more information see
http://www.cms.hhs.gov/media/press/release.asp?Counter=1551
and
http://www.hhs.gov/news/press/2005pres/20050909.html

But on September 10, benefits expert Tom McCormack pointed out what is missing from the announcement (emphasis in original):

"1. While it promises that states will later get the "full expected costs" in federal financing for temporary programs for evacuees and victims, it fails to explicitly make the essential commitment to a 100% federal match which financially hard-pressed impacted states must have.

"2. More importantly, it also fails to waive the requirement for categorical relatedness to qualify for Medicaid (i.e, besides being poor enough, one also must be aged, disabled, a member of a family with children, etc.). This means that childless, destitute ill and injured adults who need medical care-- if they've not yet been found formally disabled by SSA---can't get even this emergency, temporary Medicaid.

"3. And it even fails to explicitly waive asset tests--- which means that second automobiles, flooded/storm-damaged homes that are now vacant and unlivable, boats, small businesses, land and farm equipment----even given their greatly-reduced equity from hurricane damages---can and will still have enough value to render otherwise destitute potential Medicaid eligibles "too rich" in assets. Medicaid generally only excludes one vehicle of any value and only a currently-lived-in home of any value per family. Any other assets---including the (possibly storm-damaged, reduced value) equity of 2nd vehicles, non-lived-in (such as temporarily vacated, unlivable) real estate and bank and retirement accounts made inaccessible by the storm ---over the low state Medicaid asset levels (e.g., $2,000/$3,000 per family) can still cause ineligibility."

Debit Cards, Bank Transfers, Checks

FEMA (the U.S. Federal Emergency Management Agency) said that it would give out debit cards for up to $2,000 for immediate expenses such as food and transportation. But two days later it stopped giving out the cards, and announced that the money would be given by bank transfer or mailing a check instead -- which will take longer to deliver the funds. This is relief money that people are already eligible for under existing disaster relief, not additional funding; the debit card was intended to get them some money faster for immediate expenses.

People can apply to FEMA either at www.fema.gov or at 1-800-621-FEMA (1-800-621-3362); you might want to read "Help After a Disaster" at www.fema.gov. According to news reports, over 400,000 people have already applied. Disaster assistance is tax-free, and does not count as income for purposes of other federal programs at least.

The Red Cross is still giving its own debit cards for smaller amounts, up to about $1,500 for a large family, at least at a few locations. According to one news report, it started this program three years ago, but is now having trouble keeping up with the demand.

Volunteering

There are many volunteer opportunities. Here are two that came to our attention.

Healthcare professionals and relief personnel can volunteer through a government Web page, https://volunteer.ccrf.hhs.gov/ . There are also special instructions for volunteering as a group.

In addition, the American Red Cross has put out a call for 40,000 volunteers to help with hurricane relief.

Miscellaneous

For a short overview on preparing for future disasters, see "Some Ways to Prepare for the Absolute Worst" by Damon Darlin, The New York Times, September 10, 2005. It is available at www.nytimes.com -- but free registration is required, and payment is required for online articles after one week. (This article may be wrong on communication -- it basically suggests giving up unless you can afford a satellite phone. See "Communication in a Disaster: Success of Text Messages," below.)

Communication in a Disaster: Success of Text Messages

by John S. James

Police and other communication failed in New Orleans, and city officials could not reach each other. But text messages did get through. While police and city offices could not communicate at all, people in the disaster area could update their blogs by email and report to the world, using their Blackberry or other wireless email machine, often recharged by car battery since no other power was available. Reporters discovered that they could file stories from New Orleans by text messages, when they had no other means. Wireless text messages also worked when telephones did not after the recent London subway bombing.

Messages can get through when a network is damaged or overloaded because they can wait and keep trying, then transmit quickly when a connection becomes available -- while a telephone call requires that various equipment in different locations be available continuously and simultaneously. Also, text messages allow many more people to communicate than if they were using voice phone calls on the same channel. Short voice messages should also work (although maybe not as well) for those who cannot type. Clearly text messaging should be considered for future disaster communication.

People may want to learn how to use wireless email or short messages on their cell phones before a disaster occurs; sometimes the service has to be turned on and paid for before it can be used, and that may be impossible during an emergency. The U.S. is far behind other countries in popular use of wireless text communication, because here many companies charge extra fees, instead of including text messages in the basic service; therefore many customers cannot receive the messages, reducing the value of this medium for everyone.

Landline phones have traditionally worked fairly well in emergencies (a long wait for a dial tone means that the system is overloaded -- too many people are trying to call at once -- but often one can wait and get through). Wireless could be more reliable, as there is far less infrastructure to worry about, no hundreds of miles of wires and associated equipment. The wireless hardware could be all-weather. The towers could be self-contained using batteries and satellite, and could be airlifted in if those in the area had been destroyed.

Example: A Conversation Database

A text-plus-voice message communication system could allow several people to contribute simultaneously to an ongoing conversation database, compiled separately on everyone's portable or other equipment -- and easily viewed through a choice of filters, each showing a different communication channel with the most recent messages first. For example, rescue workers could at any time choose to see all messages, or official headquarters announcements only, or official plus all messages from their own team and any coordinating teams, or perhaps all messages related to drinking water, etc. Meanwhile, anyone with the equipment could send messages to the database when necessary; headquarters would monitor all information coming in and send it out on the appropriate channels. Pressing a button or touching the screen would instantly show a new selected channel, with no delay at all since the messages would be stored on the local device and need not be re-sent.

Rescue workers could send either text or voice messages to headquarters or to their group. These could automatically be stamped with time and sender text, and headquarters could add additional text if desired, then send the messages into the same channels as the text messages above. Only one or a few people at headquarters would need to type.

Workers who were not available due to critical tasks would not have missed the messages permanently, as they could come back to them later if necessary. And even in the worst case, if all communication went out temporarily or permanently, everyone's database would still have the messages sent in all the channels so far, to help guide coordination.

A less obvious advantage of a conversation database is that, if used well, it produces a work product immediately useful to the group as a whole. Dialog conversations (like traditional phone calls) are less likely to be useful to non-participants, unless they have time to listen to the dialog.

Text-and-voice message databases could help in disasters, at least as a backup if other communication fails.

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OK to copy this information -- but remember that the situation is changing rapidly.