This is from Harvard Medical regarding Swine flu.

I hope it answers some of your concerns regarding this current scare.

Your swine flu questions answered

An epidemic of swine flu has recently developed in Mexico and the United States, says the CDC. Swine flu has killed many people in Mexico, and the outbreak has features that suggest it could become a global pandemic. A pandemic is an epidemic that spreads around the whole world. Pandemics also often cause more severe disease than epidemics.

As of Sunday, April 26, the United States has declared a public health emergency, and suspect or confirmed cases are being reported from many parts of the world. If a pandemic happens, it could be very serious for human health and the global economy (which definitely does not need any more bad news right now).

Q: What are “swine flu” and “bird flu”?

A: Flu is a disease caused by the influenza virus. Humans, pigs, birds, and other animals all can be infected by influenza viruses. Typically, influenza viruses can infect only one species, so the influenza viruses of humans are different from those of pigs and birds. However, sometimes a virus can infect more than one species. For example, pigs sometimes can be infected not only with pig influenza viruses, but also with human and bird influenza viruses. Then these viruses can sidle up to one another and swap genes, creating new viruses that have a mix of genes-from human, pig, and bird viruses. That is what has happened with this new swine flu virus.

Sometimes this swapping of genes allows a virus that was originally able to infect only pigs or only birds to also infect humans. When that happens, we refer to the illness as “swine flu” or “bird flu.” This current virus could actually be called “swine/bird flu,” since it has some genes from pig flu viruses and other genes from bird flu viruses. However, for simplicity’s sake, it is just being referred to as “swine flu.”

Q: Are swine flu or bird flu viruses dangerous?

A: Most viruses that cause swine flu or bird flu are very hard to pass from one human to another: they don’t cause epidemics. Sometimes, however, further changes in genes create a virus that can spread rapidly among humans, and can produce a more severe illness. One reason this illness is more severe is that the virus is so new. The regular flu that comes each year is caused by a regular human influenza virus that often has similarities to the viruses that have caused the flu in years past, so people have some degree of immunity to the latest virus. The unusual swine flu or bird flu viruses that develop the ability for person-to-person spread are so different that people have little or no immunity to them. That is what some experts worry may be happening with swine flu.

Q: How bad can a global pandemic be?

A: The worst global pandemic in modern times was the influenza pandemic of 1918 to 1919. It affected about a third of the human race, and killed at least 40 million people in less than a year-more than have been killed by AIDS in three decades. The world economy went into a deep recession. The average length of life dropped for 10 years. In other words, global pandemics can be a really big deal. On the other hand, other pandemics have been considerably less serious than the 1918 to 1919 influenza pandemic.

Q: Can this new swine flu virus be easily transmitted from person to person?

A: Unfortunately, the new swine flu virus can be transmitted between humans. It is not clear yet how easily it is transmitted, nor how it is transmitted. Almost surely it is transmitted by sneezing and coughing, and by skin-to-skin contact (like shaking hands or kissing) with an infected person.

Q: How sick do people get from this virus?

A: Most people infected with the virus have recovered from the illness. In fact, all of the people in the U.S. have recovered.

However, in Mexico, some people have kept getting sicker, and eventually died. The regular flu viruses that come each winter can occasionally cause severe illness and death. Most often, this happens in very young children or frail elderly people. What worries some experts is that many of the deaths in Mexico have been in young, healthy adults. In past pandemics, like the influenza pandemic of 1918 to 1919, it was also young, healthy people who were most likely to die. Experts are puzzled as to why the infection currently appears to be worse in Mexico than in the U.S.

Q: Are there treatments?

A: As of now, the new virus is killed by two antiviral medicines-oseltamivir and zanamivir. Based on experience with other flu viruses, treatment would be most effective if given within 2 days of the onset of symptoms. As long as this current swine flu virus is infecting people, it is likely that health authorities will recommend that people with more severe illness take these medicines.

On the other hand, there is no proven benefit from using the medicines before symptoms develop, and there is proven harm: unnecessary widespread use of these drugs could produce drug-resistant viruses.

There is no vaccine yet for the new virus, and the Centers for Disease Control and Prevention (CDC) has expressed doubt that this year’s regular flu vaccine will offer protection.

Q: How do I know if I’ve caught swine flu?

A: The initial symptoms of this flu virus are like those of the regular, annual flu viruses: fever, muscle aches, runny nose, and sore throat. Nausea, vomiting, and diarrhea may be more common with this swine flu than with the regular flu. If this epidemic hits your community and you develop flu-like symptoms, it is likely your doctor will take samples from your throat or material you cough up and send them to the state public health laboratory for testing.

Q: How do I protect myself?

A: To protect yourself from catching swine flu, take the same steps you would to prevent getting any cold or flu:

• Wash your hands or use alcohol-based hand cleaners frequently.
• When you greet people, don’t shake hands or exchange kisses.
• Avoid contact with people with flu symptoms.
• And to protect others, if you develop sneezing and coughing, be sure to use tissues to wipe your nose and cover your mouth, and to throw the tissues in the trash or toilet bowl.

Q: How long are people contagious?

A: Adults should be considered contagious until at least 7 days after the start of symptoms; with children, it may be 10 to 14 days.

Q: Can you get swine flu from eating pork?

A: Absolutely not. But, as you probably know, you need to cook pork thoroughly to avoid getting other illnesses that can be spread by undercooked meat.

Q: Will there be unusual restrictions on our lives if there is a global pandemic?

A: If there is a global pandemic, for some period of time governments may well restrict travel (indeed, some governments already have). Governments also may close schools and public places, require as many people as possible to work from home, tell any people who develop symptoms to isolate themselves at home, and tell people to seek medical attention immediately if more serious symptoms develop.

What are those symptoms?

For adults, teens, and kids aged 3 to 12, the most worrisome symptoms are:

• Shortness of breath
• Persistent vomiting
• Confusion
• Dizziness

For children younger than 2, the most worrisome symptoms are:

• Very rapid breathing
• Not interacting normally, not eating or drinking normally, being unusually irritable, or appearing unusually sleepy
• High fever and rash
• A bluish color of the lips and skin

Q: Where can I get more information?

A: For updated information from the CDC, go to: http://www.cdc.gov/swineflu or visit Harvard Health Publications’ Flu Resource Center.

This is another reminder from the IDF to take action on this bill ASAP.   Please take a couple of minutes and do this to ensure that we, as PIDD patients, have access to our much needed IgG therapy.

Action Alert! - We Need Your Help!
New Senate Legislation to fix Access and Reimbursement

Many members of primary immunodeficiency community experience delays in and denial of treatment due to insufficient Medicare reimbursement. A report from the Office of the Inspector General showed Medicare reimbursement for IVIG is lower than the cost many providers pay for the product. As a result, a number of physicians and hospitals cannot afford to administer IVIG treatment to Medicare patients. This serious problem affects the entire community as an increasing number of private pay insurers are following Medicare’s lead to determine reimbursement rates for IVIG.

To fix this problem, legislation was introduced March 25, 2009 into the United States Senate. Senators John Kerry (MA), Lamar Alexander (TN), Sheldon Whitehouse (RI), Ron Wyden (OR) and Sam Brownback (KS), introduced the Senate Bill S. 701, The Medicare Patient IVIG Access Act. An identical House bill is expected to be introduced by the end of April 2009. This legislation, offers a solution to the current IVIG access crisis by establishing appropriate reimbursement in all sites of care for our patients. It also changes current policy regarding Medicare coverage of home infusion to include the cost of items and services related to the administration of IVIG in the home for primary immunodeficient patients.

IDF is working in coalition with other patient organizations and physician organizations including the American Academy of Allergy Asthma and Immunology (AAAAI) and the Clinical Immunology Society (CIS). With the strong leadership of the policymakers who have signed onto support this legislation, IDF hopes to improve access to treatment and the quality of life of the countless patients who struggle with negative health outcomes, increased intervals of care, change in site of infusion, difficulty finding providers, and denial of treatment.

Click here to view the Medicare Patient IVIG Access Act page

What you can do to help

Go to the IDF Action Alert and contact your Senators to ask them to sign on as cosponsors to S. 701, The Medicare IVIG Patient Access Act. With your help, we can move forward to restore proper access to this life- saving treatment for patients with PIDD. Your legislators need to know why IVIG therapy is so important, so please utilize the text box to add the story of how IVIG treatment impacts your life, focusing on any access problems.

Be the voice of the PIDD patient community!

Meet with your legislators at home

April 6-17 marks the Spring District Work Period. During this time, your Senators and Representatives will be working at home in their district offices. This presents the ideal opportunity to speak with your legislators about the importance of this legislation. As a constituent, it is important that you share your concerns with them. IDF encourages you to visit your legislators during the district work period and ask your Senators to sign on to cosponsor S. 701, The Medicare Patient IVIG Access Act. Ask your Representative to be an original cosponsor of the House companion bill, which will soon be introduced.

To locate contact information for the local offices for your Senators and Representative, simply visit www.senate.gov and www.house.gov.

Take Action!

New Senate Legislation to Fix Access and Reimbursement for IVIG in the New 111th Congress

Take Action!

Contact Your Senators

Many members of the primary immunodeficiency community experience delays in and denial of treatment due to insufficient Medicare reimbursement. A report from the Office of the Inspector General showed Medicare reimbursement for IVIG is lower than the cost many providers pay for the product. As a result, a number of physicians and hospitals cannot afford to administer IVIG treatment to Medicare patients. This serious problem affects the entire community as an increasing number of private pay insurers are following Medicare’s lead to determine reimbursement rates for IVIG.
To fix this problem, legislation was introduced March 25, 2009 into the United States Senate. Senators John Kerry (MA), Lamar Alexander (TN), Sheldon Whitehouse (RI), Ron Wyden (OR) and Sam Brownback (KS), introduced the Senate Bill S. 701, The Medicare Patient IVIG Access Act. An identical House bill is expected to be introduced by the end of April 2009. This legislation, offers a solution to the current IVIG access crisis by establishing appropriate reimbursement in all sites of care for our patients. It also changes current policy regarding Medicare coverage of home infusion to include the cost of items and services related to the administration of IVIG in the home for primary immunodeficient patients.
IDF is working in coalition with other patient organizations and physician organizations including the American Academy of Allergy Asthma and Immunology (AAAAI) and the Clinical Immunology Society (CIS). With the strong leadership of the policymakers who have signed onto support this legislation, IDF hopes to improve access to treatment and the quality of life of the countless patients who struggle with negative health outcomes, increased intervals of care, change in site of infusion, difficulty finding providers, and denial of treatment.

What you can do to help

Contact your Senators to ask them to sign on as cosponsors to S. 701, The Medicare IVIG Patient Access Act. With your help, we can move forward to restore proper access to this life- saving treatment for patients with PIDD. Your legislators need to know why IVIG therapy is so important, so please utilize the text box below to add the story of how IVIG treatment impacts your life, focusing on any access problems.

Be the voice of the PIDD patient community!

Think about how often you’ve tried to explain PIDD to someone new.   Think about the reaction(s) you may have gotten.  Many thought you might be crazy, many thought you might have ANOTHER disease, and many just stared at you like a deer caught in the headlights.

This month is the time we attempt to and often successfully educate others about our PIDD.   The Immune Deficiency Foundation has offered some great suggestions in their recent newsletter.   I’m going to paste the info and the links here so that you can TAKE ACTION and help SPREAD THE WORD.

April is PIDD Awareness Month
Time to Spread the Word!

This April, celebrate Primary Immunodeficiency Disease Awareness Month by educating others.  Now is the time to take action in your community and below is a list of some of the many ways you can help spread awareness. Let us know of your activities and success with promoting awareness, and remember that your efforts might help save a life!

Get the Word Out

Set up a display or post materials at hospitals, health fairs, libraries, plasma centers or other community gathering spots.

Awareness Month is the perfect time for you to become involved and help others understand more about primary immunodeficiency diseases. The “Is it Just and Infection?” poster is the perfect poster for your display, and is available by contacting IDF at 800.296.4433, or by clicking here.

If you want more posters or you need additional handout information about primary immunodeficiency diseases and IDF services, simply contact IDF at 800.296.4433 or e-mail idf@primaryimmune.org. All materials are free of charge.

Contact Your Local Media

Reporters pay attention to stories about real people, so share your own personal experience with primary immunodeficiency disease. Use Primary Immunodeficiency Disease Awareness Month as an opportunity to educate the public.
Click here to download the IDF Media Kit; which has ideas, and sample materials to send to your local media: 

THINK ZEBRA!

In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras.” Most physicians are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones.  However, sometimes physicians need to look for a zebra. Primary immunodeficiency patients are the zebras of the medical world. So IDF says THINK ZEBRA! Let’s teach the world about “ZEBRAS” while raising funds to help promote awareness of primary immunodeficiency diseases.

Click here to visit www.primaryimmune.org/zebra and learn more about IDF’s THINK ZEBRA! campaign:
Blue Jeans for Healthy Genes
Blue Jeans for Healthy Genes Day is a special event when people are asked to make a donation to the IDF for the chance to wear jeans (to work, school, etc.) and join the fight against primary immunodeficiency diseases. An alternative way to participate is by hosting the Hanging Up Jeans program, which creates awareness and raises funds by offering small cut-out pairs of paper jeans for a donation. The jeans are then signed by their sponsor and put on display.

Host a Blue Jeans for Healthy Genes Day or the Hanging Up Jeans program at workplaces, companies, schools and organizations and seize the opportunity to educate those around you and raise funds for further research and patient programs. Blue Jeans for Healthy Genes kits and more information are available here.
Take Action!
Primary Immunodeficiency Disease Awareness Month is the ideal time to undertake some of these ideas or try a few of your own. IDF staff is available to answer questions, help with plans and provide the materials you need.  For more information, contact Adam Freestone at 443.632.2546 or afreestone@primaryimmune.org.