Health policy: The fight for an Alpha-1 guideline
Author
Marion Wilkens, as published in Alpha1 Journal 1/2018
In the first half of 2018, we focused more on health policy. It's a vast field in which we still have much to learn and need to become much more involved. Who is familiar with the German Alpha-1-GuidelineNo one? No wonder, because they don't exist. We are – as so often – part of COPD, although AATD is known to also lead to liver or skin disease. The effects of AATD even occur in children, sometimes with severe courses and in very rare cases requiring transplantation – all areas not covered by COPD.
But how do you proceed, who do you approach? Our Health Minister, Mr. Spahn, directly? Then we received help from Mr. Alexander Wilke (from the Institute for Evidence-Based Health and Care Management (IfGV).) very right, who together with us a Position paper wrote.
Knowing that it is virtually impossible to create our own guideline, we would still like to at least in the COPD guideline We will also contribute our points, and we will fight harder for this in the future. But we don't just want to contribute to the COPD guidelines, but also, for example, to the... Guideline for the treatment of bronchiectasis (European Lung Foundation: Bronchiectasis).
Both guidelines mandate testing for AATM – there is sufficient data to support this.
Incidentally, there is an international... Alpha-1 guideline.
The position paper, entitled „Opening of the DMP – Part COPD for patients with alpha-1 antitrypsin deficiency in Germany“ was a start, but it didn't stop there, because in March Mr. Wilke and I presented at the Joint Federal Committee (GBA) We presented our concerns in Berlin and were met with a great deal of understanding.
Our arguments were taken to the GBA subcommittee and discussed there; at the beginning of April we received a very positive response. The committee members advocated opening the COPD disease management program (DMP) to patients with alpha-1 antitrypsin deficiency.
According to Mr. Wilke, we have already achieved a great deal – the door is open. In my opinion, everything takes far too long.
On April 24th, Alpha1 Global organized a meeting at the European Parliament. Approximately 30 of us participated (Alpha1 experts, patient representatives from various countries, and 1-2 EU parliamentarians). Patient representatives from six countries reported on their experiences with Alpha-1 antitrypsin deficiency in their respective countries.
This also showed that there is still much to be done to be heard by health policymakers and even more to achieve a better situation.
On April 25th, the company CSL introduced a Alpha-1 Awareness Day (European Alpha-1 Awareness Day) was held with a roundtable discussion. This also consisted of patient representatives, Alpha-1 experts, and representatives of other organizations, and aimed to deepen the understanding of this rare genetic disorder. (EU Roundtable on Alpha-1 Antitrypsin Deficiency (AATD)).
What good did that do? – I don't know. But in any case, raising awareness is important, and we see part of our responsibility as constantly drawing attention to ourselves and our illness.
„"Constant dripping wears away the stone"“
Eventually everyone will know about Alpha-1 Antitrypsin Deficiency – we're working on it.
Marion Wilkens, as published in Alpha1-Journal 1/2018.
