Author
Marion Wilkens, as appeared in Alpha1 Journal 2/2023.
In the special supplement of WELT published at the end of September (see also page 39), an article on COPD by Dr. Watz from Großhansdorf appeared, and on the facing page was the article "Genetically Determined COPD," which I had the privilege of writing. Once again, reading it made me painfully aware that many patients with alpha-1 antitrypsin deficiency are among the COPD patients who have not been tested and are unaware of their actual diagnosis.
A brief calculation: Approximately 6.8 million people in Germany suffer from COPD, and we suspect that up to 10,000 of them are hidden % alphas. This would mean 680,000 people with a deficiency. Fortunately, most of these are only carriers, but many also have a severe deficiency. Recognized calculations* suggest that up to 20,000 people in Germany have a severe deficiency, but they are still very rarely identified. The current estimate is between 2,000 and 3,000. We do not have more precise figures.
Back in 2018, we endeavored to include the AATM test in the COPD Disease Management Program (DMP). The DMP aims to provide structured treatment for people with chronic illnesses, in this case, chronic obstructive pulmonary disease (COPD). Our arguments were:
- Shorter time to diagnosis
- Fewer exacerbations
- Earlier start of treatment
- Improving quality of life
The position paper was sent to the Federal Ministry of Health (BMG) at the time and forwarded from there to the Federal Joint Committee (GBA). Although we made it to the hearing at the GBA, it wasn't discussed until four (!) years later during the next revision. In June 2022, the German Society for Pneumology (DGP) supported us with an official statement. They advocated for screening for AATD after a COPD diagnosis. The GBA rejected this, arguing that the Institute for Quality and Efficiency in Health Care (IQWiG) could not derive the measure from the National Care Guideline for COPD (NVL COPD), which was the authoritative guideline. They also argued that AATD should not be considered a differential diagnosis, but rather the underlying cause (the type of COPD).
With this knowledge, we then focused on including AATM screening in the COPD National Care Guideline (NVL). The National Care Guideline (NVL) program is a joint initiative of the German Medical Association, the National Association of Statutory Health Insurance Physicians, and the Association of Scientific Medical Societies, founded in 2002 to improve quality in healthcare in Germany through multidisciplinary medical guidelines and patient information.
As of today, the current COPD S3 guideline does not recommend AATM testing. Other guidelines already include this recommendation, such as the GOLD guideline (as of December 2022), which can certainly be considered the most important international guideline. To our knowledge, the current national care guideline (NVL) is valid until 2026, but can also be updated in certain areas at any time before then as new findings emerge.
The question then arises: what constitutes "new findings"? And how do we best begin? Who or what could help us? What offers the best prospects for success? To address these questions, we met with Professor Greulich (A1 Center), Dr. Watz (German Society for Pneumology and Respiratory Medicine), and Dr. Butt (German Respiratory League) to discuss further steps. Our first step will be a two-part statement to the German Society for Pneumology and Respiratory Medicine (DGP). The first part will be written on behalf of the Alpha-1 Centers, providing a medical/scientific perspective, while the second part will be written by us, summarizing the perspective and necessity from the patient's point of view. Together, we are requesting the DGP's support.
Further information and the two statements will be available shortly on our homepage.
* taken from the International Journal of COPD 2017:12 561-569
