The Role of Patient's Support Groups in the Control of Allergies (Manuel F. Ferreria, M.D.)

Patients support groups that are concerned with the control of allergies are not a popular type of organization in the Philippines. Allergy and asthma prevention have always been a priority for our patients. This is a gold standard in every practicing allergist.

Patients associations or support groups help to promote prevention. Organizing into groups is a way to decrease the burden of the disease or even prevent symptoms from occurring. Preventive actions are very numerous and the target groups vary greatly. From the single patient with his/her specific disease related problems, up to society as a whole, there is a need for a more generalized approach to prevention.

Institutions Involved

The institutions involved are diverse, ranging from patient support groups like the National Asthma Movement. Health organizations, particularly the World Health Organization, are very active in promoting preventive measures. Definitely, we need scientific and medical societies and the society that is pioneering in this endeavor is the Philippine Society of Allergy, Asthma, and Immunology. We in the society are trying to convince the government bodies or agencies to help us in this program.

Over the last three decades, allergic diseases and asthma have become increasingly prevalent throughout the world and the trend continues upwards. These diseases are noted both in children and adults, and across all social classes.

What are the pressing problems? Now, with the increasing prevalence of allergic diseases, our pressing problem is public health policy. What are our senators doing? Are they trying to create legislation that will help our sufferers? There has been some legislation, but these are not enough.

There are also scientific reasons. Do we have data coming from the Philippine Pediatric Society, Philippine College of Physicians, or Philippine College of Chest Physicians, from our society or from the Philippine Academy of Pediatric Pulmonology that will help support us when we are asked to explain the need of legislative action? I hope we can gather enough data to identify which of the changes or combination of changes that have occured in our society during the last years that can explain the rising trends in allergic disease.

History of Support Groups

Let me give you a short history of patient allergy support groups and organizations. Patient allergy support groups have been active since the end of the 19th century in Europe, USA and Canada. In Europe, the support group first started as trhe Pulmo-Tuberculosis Association but since the decline of the Tuberculosis problem, the group was converted to asthma and allegic group. In other countries, most groups were established in response to a need to inform and support patients with allergy and asthma. Today, there are many asthma and allergy support groups and associations throughout the world that are trying to help our patients. Some are national and some are even internal groups.

This is a list of support groups by countries: in the US, they have more than a hundred support groups. Examples are Allies Against Asthma, Allergy and Asthma Network-Mother of Asthmatics, Inc., Allergy and Asthma Network and Food Allergy Survivors Together.

In Europe, they still have a good number of support groups. They even established the European Federation of Allergy and Airways Diseases Patient's Association. Ther is also the Allergy Early Diagnosis Campaign. There are just some of the support groups present in other countries.

In Australia, they have a lot, but I'm quite interested in this group, the Food Anaphylactic Children Training and Support (FACTS). In Canada, they have the Allergy Asthma Information Association and Asthma Society of Canada.

In other parts of the world like in Asia, particularly in Thailand, the asthma support group is being funded properly and this is also true in Malaysia. In the Philippines, with the help of Dr. Lilian Lee, the National Asthma Movement (NAM) was established.

National Asthma Movement (NAM)

The NAM is an organization of multi-sector groups involved in activities that help decrease morbidity and mortality due to asthma, improve the quality of life of asthmatics, improve the level of health care given by health care providers and increase public awareness of asthma. At the same time, we are holding Asthma Camp and Asthmalympics.

Just to show you what NAM is doing, we try to participate in the World Asthma Day as declared by the World Health Organization (WHO). This day is dedicated to encouraging the asthmatic patient to participate in the various activities and to be knowledgeable about the illness. This was held at Luneta Park and we had a very, very big crowd that attended the Asthma Day. In 2004, we also had Asthma Day in conjunction with the Asthmalympics that was held at the Quezon Memorial Circle and the Benigno Aquino Park. This has been a very successful affair led by the NAM.

Other Countries

Other countries are also starting to put up their own support groups: the Allergy Society of South Africa, Allergy Awareness Association of New Zealand, Estonian Allergy Federation, Falkland Island's Asthma Support Groups, Asthma Society of Ireland, and Health on the Net Foundation of Switzerland.

Composition of the National Secretariat

The national organizations' secretariats are mainly staffed by professionals from different sectors, such as the physicians, nurses, health educators, parents, and even volunteers who often have personal experience in dealing with allergic diseases. We are all concerned about the consequences of the increasing prevalence of these diseases and we recognize that prevention is very important.

In order to achieve our goals there is a need for proper information and education of the allergic sufferer, full access to up-to-date diagnostics, therapeutic and training facilities, information at antenatal and at mother-child clinics about prevention of allergy and in other countries, allergy-adapted environments at schools and day care centers.

Laws on tobacco smoke-free public environments are present but the problem is implementation. Tobacco smoke-free homes for children, national building regulations for healthy buildings, reduced indoor and outdoor pollution, and more research.

What are patient's support groups and organizations for?

Support groups can promote better health for allergy and asthma sufferers via information, meetings, actions, training and education. Support groups can enhance communication between allergic patients and othes; support groups can raise awareness of allergies and asthma by the use of media; support groups promote the interest of allergy and asthma sufferers.

Support groups can lobby and cooperate with governmental institutions and specialty medical societies; support groups can promote research and cooperation with scientific organizations; support groups can further patient's self-management and well being; support groups can work in partnership with health care professionals.

How can support group promote better health for asthma and allergy sufferers?

- by improving patient's knowledge of how to cope with their disease, educational programs;

- informative training and educational meetings, to learn, to exchange knowledge

- with the excellent program presented by the support group, our allergic sufferer will realize that he is not alone in fighting the disease.

- this also has a major stimulating effect on our patients

- with the support group, our patients will not feel isolated; they will not be resigned to suffer their symptoms by themselves; the support group will be able to establish contact with other allergic sufferers.

- disseminating information about a disease is not something that can be improvised; training courses are essential foa all educators in allergic diseases

Raising awareness of asthma and allergy in the public 

• proper and adequate information using: media, printed materials, internet, awareness day celebration on local and national levels are important.
• It is also important for people at large to be informed about the consequences of asthma and allergic diseases 

Promoting the interest of asthma and allergic sufferers 

• let us work for a healthy environment;
• let us enhance the recognition of asthma as a social and chronic problem in our community knowing that the disease is on the rise and may outrank other diseases;
• the community should recognize the benefits of a healthy work and play area;
• will improve the quality of life worldwide. 

Close collaboration between patient support groups and the physicians should be encouraged. In other parts of the world, the patient organizations or support groups fund scientific researches and support scientific positions.           

International projects that promote research have come from WHO, World Allergy Organization, Allergic Rhinitis and its Impact on Asthma, International Study of Asthma and Allergy in Children, Global Resources in Allergy and Global Initiative for Asthma. 

Patient self-management and well being 

Under patient self-management and well being, the support group can motivate the patient to: take a role in self-management and be an informed decision maker; be an active partner with responsibility for his or her own health and recovery; be better informed and more involved in treatment choices, and consequently, better comply with the physician’s advice. 

Patient satisfaction with their physician and health services affect health outcome and prevention. It is directly related to the physician’s effort to deal with the patients’ need for information, support and advice. Partnership with healthcare professionals is therefore one of the important goals of patients support group. 

Patients support groups work on behalf of allergy sufferers, with proper representation in non-government organizations, medical societies, and government to urge the promotion and protection of the interest of allergic patients. 

Be an allergy advocate and have your voice heard on issues about pollution and global anti-tobacco treaty. 

My last message, can we duplicate this – make changes in our health setting? The answer is in your hands.