Petition richtet sich an: German Minister of Health Hermann Gröhe

What is HPU (Hämopyrrolaktamurie)?

HPU is a metabolic disease which has been discovered a long time ago that causes a malfunction in the production of haem (/hem). Haem is a molecule bound to iron which is crucial for the functioning of many other proteins such as haemoglobin for oxygen transport. In people with porphyria (which is recognized as a disease in Germany), one enzyme of the haem production is impaired. In HPU affected, three to four steps of this biosynthesis are malfunctioning.

Therefore, vitamin B6, zink and sometimes manganese are excreted by the body at such high rates that it can't be balanced by any dietary adjustments. The absence of these substances affects many parts of the body. Vitamin B6 for example is involved to some extend in any process of the body.

Besides losing all these minerals and vitamins, the ability of the body to detoxify itself is reduced and (environmental) poisons and heavy metals accumulate, which leads to significant health issues. Porphyria as well as HPU are ususally genetic diseases but can be initiated by acute poisoning (heavy metals, vaccinations etc.) or by stress and infections.

People who are living with HPU are more likely to be affected by autoimmune diseases (like hashimoto, diabetes mellitus type 2, lupus and many more). Additionally, many suffer from allergies and histamine intolerance, celiac's disease, fructose or lactose intolerance.

Affected people must pay every examination, test and therapy by themselves. If they do not have enough money, the therapy is not possible, because the German health care system does not acknowledge the disease and therefore does not support affected in any way.

What we demand:

!. We want a group of experts that is made up of affected people, representatives of the German ministerium of Health, representatives of the health insurance companies and scientist and doctors who are informed about the issue.

2. A study should be conducted about the topic of HPU/KPU working together with the affected with the goal to get heath insurance companies to recognize HPU as a disease or at least rates it as a metabolic dysfunction that needs to be treated and leads to far-reaching repercussions if it is not. HPU and KPU are very similar diseases, KPU affected suffer from a lack of B6, zink and manganese as well, the treatment is similar as well, therefore we can restrain from explaining KPU further but the study should involve both diseases.

3. Until the study data is analyzed, there should be an agreement for a short-term solution for the financial support for the supplements between all parties from point 1.