Education and Advocacy
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The AAA is an organisation dedicated to the help and support of Australians who are affected by and interested in Alpha-1 Antitrypsin Deficiency (Alpha-1).
There are several means of communicating with the AAA, its members, and others interested in Alpha-1:
- You can follow our tweets on Twitter.
- You can 'Like' us on Facebook.
- You can follow us at LinkedIn.
- You can join our LinkedIn Group.
- If you live in Australia or New Zealand, you can communicate with other Australians and New Zealanders affected by and interested in Alpha-1 by joining our online discussion group.
You can also communicate with us in a more traditional way - see the Contact page for options.
Please consider visiting the web sites of our valued sponsors. Let them know that the AAA referred you, which tells our sponsors that we appreciate their support.
If you're feeling cashed up, please consider making a donation to help the AAA achieve some of its objectives. At the Donate page, you'll find a link to donate via major credit cards or PayPal. The smallest of amounts still help. If you're in an influential position within a company, please do consider inquiring about what your company can do for the AAA.
T & C Donation / Investment
T & C Campaign Creation
Organ Transplantation of the Lung or Liver
Lung/liver transplantation is becoming a viable option for some patients. As experience with new surgical techniques increases (particularly single-lung transplantation), lung transplantation may become more attractive to Alpha-1 patients with end-stage lung disease. Also, living-related liver transplantation is an option at some transplant facilities.
Transplantation is only for patients with end-stage lung or liver disease, which means that they are resistant to more conservative therapies (such as treating symptoms or augmentation therapy). Patients must have extensive damage in the lungs or liver to warrant this surgical option.
Transplant Recipients International Organisation (TRIO)
Transplantation and organ donation information and resources for transplant candidates, recipients, donors, and their families.
United Network for Organ Sharing
The UNOS Organ Center is available 24 hours a day, every day of the year, to facilitate organ sharing among transplant centers, organ procurement organisations and histocompatibility laboratories across the U.S.
Drug and Other Therapies
These are among the most most important types of medical therapy for the newly diagnosed individual with Alpha-1 Antitrypsin Deficiency. Although these are most relevant to lung-affected individuals, remember all Alphas have risks to their lungs. Some of the therapies listed are relevant for all Alpha-1 patients.
It's important to have a yearly flu vaccine and a Pneumovax® shot every five to six years. Since your lungs are vulnerable to pollutants and infections, the use of these prophylactic vaccinations is of the utmost importance. Furthermore, your patient may find this is the easiest and most convenient type of therapy available. Effective vaccines are available for hepatitis A and B. These are especially important in patients with established liver disease.
- Annual flu vaccine
- Administration or confirmation of Pneumovax vaccine (every 5 to 6 years)
- Hepatitis A vaccine
- Hepatitis B vaccine
Aggressive Treatment of Lung Infections
Prompt and aggressive treatment of infections is recommended due to the increased neutrophil elastase burden during periods of infection. It's important to notify your doctor immediately when you suspect a lung infection. Here is a list of symptoms you should watch for carefully:
- increased shortness of breath
- increase coughing (may not be productive)
- chills with fever
- changes in color of phlegm
Because the lungs attract more leukocytes when an infection is present, and the leukocytes release neutrophil elastase, it is important to control lung inflammation. Antibiotics may help to speed recovery.
Aggressive Evaluation of Liver Complications
It is important for parents, caregivers or significant others to be aware and advised of any indication of complications related to liver disease.
Here is a list of common symptoms that may require therapy:
- increased abdominal swelling or edema of the extremities
- coughing up or vomiting bright red blood
- blood in toilet or diaper
- blackish, purplish or dark-colored stools
- confusion, crankiness, unusual crying, disorientation, lethargy
- little or no urine
- dark (tea- or cola-colored) urine
- lack of energy, easily fatigued
- no appetite/refusal to eat or drink
- itching or increased itching
- peripheral edema
- change in or the appearance of jaundice
It's very important to carefully read the labels on over-the-counter medications. Be sure to inform your doctor or other healthcare provider if any alternative medicines (such as Milk Thistle) or vitamin supplements are being taken.
Your doctor may prescribe bronchodilators to relive your Alpha-1 lung-related symptoms. Bronchodilators relax the large muscles around your airways so that more air is allowed in and out. There are two main kinds of bronchodilators: beta-agonists and anticholinergics. An example of a beta-agonist is the quite common asthma medication albuterol. Beta-agonists are typically quick-acting "rescue" medications. They work in 5 to 15 minutes and last from 4 to 6 hours. Anticholinergics are longer-lasting than beta-agonists, but still fall in the quick-acting category. An example of this subclass is Atrovent.
Inhaled corticosteroids can be useful as a preventive treatment for Alpha-1 lung disease and oral corticosteroids may be prescribed by your doctor, particularly during flare-ups (which are referred to by healthcare as "exacerbations").
Supplemental oxygen may be needed for some alpha-1 related lung disease. Oxygen is important for individuals with low blood oxygen levels, during active infections and/or with progressive destruction of the lung tissue. Supplemental oxygen may be needed during exercise or sleep.
Supplemental oxygen is also recommended during exercise. For some Alphas, it is especially important when traveling by air, because cabin pressure changes with altitude.
Augmentation Therapy may be recommended for certain patients with lung disease. It is not used for patients with liver disease.
Alpha-1 Antitrypsin (AAT) augmentation therapy consists of weekly intarvenous (IV) infusions of AAT derived from human plasma. It is used to increase the concentration of the protein in the blood and lungs. Augmentation therapy has been approved by the Therapeutics Goods Administration (TGA). You should discuss any questions you have about augmentation therapy with your physician.
Read and share the AAA's Position Paper on augmentation therapy.
Clinical Criteria for Use
Augmentation therapy is usually only prescribed for patients with Alpha-1 Antitrypsin Deficiency (AATD) related emphysema and certain other rare manifestations of AATD, eg. panniculitis. Augmentation therapy is not a treatment option for AATD liver disease. Augmentation therapy is not generally recommended for individuals with normal lung function. It's generally reserved for patients with phenotypes Pi Z, Pi Z/null, Pi null null, and/or patients who have AAT serum levels of less than 0.8 grams per litre (g/L). It is not generally given to people who have mildly deficient phenotypes.
- Augmentation can be administered in a doctor's office, hospital clinic or in a facility where intravenous infusions are routinely given. Additionally, many companies offer home infusion services. You should check with your individual insurance carrier as criteria for services and benefits vary greatly.
- Patients who are motivated and physically able may be taught to administer augmentation therapy. A willing family member or significant other may also be trained and be involved in the process and care. It is imperative for individuals interested in self infusion discuss their intention with their physician and develop of plan of care. They must identify a nurse willing to work with them on a consistent basis to complete training on all aspects of therapy. Patient safety with home self-infusion is always a primary goal.
Safety of Augmentation Therapy
Augmentation therapy is prepared from pooled human plasma that has been screened for hepatitis A, B, and C and tested for HIV. Additional antiviral procedures are utilised as a precaution against transmission of infectious agents.
Known Side Effects
There are relatively few side effects that have been reported: headaches, muscle and joint pain, and lower-back pain are the most frequent complaints. For patients with severe COPD or heart failure, worsening of shortness of breath may occur.
Your doctor will probably test you for IgA deficiency prior to starting augmentation therapy because if you have both AATD and IgA, you could develop a severe allergic reaction (anaphylaxis) to the AAT augmentation therapy.
Augmentation Therapy Resources
AAT replacement therapy from Kamada
AAT replacement therapy from Grifols
AAT replacement therapy from CSL Behring
Every Alpha, being a friendly term referring to somebody who's known to have Alpha-1 Antitrypsin Deficiency (AATD), has the opportunity to channel their motivation and frustration into something positive — community outreach. You can make a difference in your own special way and contribute to the betterment of the AATD community.
Community outreach can occur in many different ways:
Start a Support Group
Peer support is vital to all Alphas and family members. You can share your experiences, learn from other Alphas and empower yourself to take charge of your health in a safe environment.
If there is no support group in your local area, please consider starting a group and becoming a support group leader. A support group leader's primary objective is to create a caring, supportive, non-judgmental atmosphere for Alphas to come together. A leader, along with help from others in the group, may set dates for meetings, organise a venue, determine topics for discussion, and/or arrange speakers for meetings.
You can also register for and participate in online discussion via the AAA's discussion forum.
Create Awareness in Your Community
November is Alpha-1 Awareness Month
Get ready to be active during the month of November! The Alpha-1 Association of Australia is asking the community to get involved in November to spread awareness about AATD. There are many different ways you can participate and we encourage you to at least do one thing! Listed below are some suggested ways to spread awareness:
- Contact your local newspaper about Alpha-1 Awareness Month (November).
- Contact a news or health editor about AATD and your personal story.
- Interview with local TV / radio stations, eg. chat show.
- Place a Public Service Announcement with your local radio / TV station.
- Share your story on YouTube.
- Write a letter to the Editor about an advocacy issue or on AATD awareness.
- Speak at a local club or civic / service group.
- Post information about AATD on Facebook / Twitter (use the hashtag #Alpha1OZ for each one of your social media posts).
- Educate your family and friends about AATD.
- Write to your local Member of Parliament to share your personal story about AATD.
- Provide your physicians with literature about AATD.
- Share information about AATD at your local community organisations.
- There are ALWAYS things that can be done to further the cause of the AAA, and your help will be very much appreciated. If you have time and interest, please contact the AAA for ways in which you can contribute.
Help Identify Alphas
It is estimated that more than 90% of individuals living with AATD have not been diagnosed. You can help identify Alphas by spreading awareness in your local community:
- Educate your physicians and other healthcare providers about AATD.
- Participate in local health fairs or events.
- Approach corporate sponsors. A sponsor can have a logo and link included on the AAA website.
- Identify and apply for grants.
- Arrange a fundraising barbecue (organisations such as Woolworths and Bunnings will often provide the barbecue and ingredients - it just needs your time).
- Arrange a fundraising movie night.
- Register participation in your local Grill'd store - see Grill'd Local Matters.
- Arrange a raffle.
- Set up a sports tipping competition.
- Ask your employer if it will support you with your fundraising initiative. A small salary deduction from each employee is a popular method of corporate assistance. Bear in mind that donations to the AAA are income tax deductible.