The ALS Pharmacy Program offers specialized medication management and participation in medical research for people with amyotrophic lateral sclerosis.
When registering for the ALS Pharmacy Program, pharmacists and coordinators, as well as physicians and research institutions, can be connected through a digital platform - via the APST care portal. Furthermore, participation in surveys and research projects as well as the use of the ALS app is possible via the personal account.
Importantly, participation in the ALS Pharmacy Program is also possible for patients who have no experience with or access to the Internet. In this constellation, the pharmacists, coordinators and scientists use the APST care portal "between themselves" - contact with the patient in that case is made either by telephone, SMS, e-mail or by mail.
In a personal, telephone or electronic contact with patients (and their relatives), medical partners (physicians, social services) as well as providers, coordinators enable a supply management for necessary medications and medical devices.
The ALS pharmacy program does not affect the standard care provided by physicians and other care providers. The decision and selection ("indication") for medications lies unrestrictedly with the physician. The review of the appropriateness and cost-effectiveness of a supply also remains the unchanged responsibility of the physician. The patient is entitled and able to terminate participation in the ALS Pharmacy Program at any time and without giving reasons.
The pharmacy program is offered to patients under the following, special conditions:
a) for diseases with special conditions:
• serious illness
• complex chronic disease
• rare disease
b) in case of care with special conditions:
• high organizational demands in care for patients and medical partners
• high need for specialization to ensure quality of care
• high need for coordination of different medical partners and providers
• high need for health services research
In the case of complex and rare diseases, there may be special needs for drug supply, which relate to the following areas of responsibility of pharmacists:
• advice on medicines
• preparation of prescriptions
• collaboration with care partners from other health care professions
Advice on medicinal products
Advising on effects and side effects as well as supporting the appropriate use of medicines is one of the regular tasks of pharmacists. However, in the case of complex and rare diseases, it is advantageous to have the pharmacist's special expertise on these diseases. Thus, an experiential knowledge of dose-response relationships and side effects can be brought to the pharmacist's counselling on the effects and risks of drugs and their appropriate use.
A specialized need for advice exists in the case of an increased risk of adverse drug reactions as well as in the case of drug therapy in an area of application for which there is no indication or in a modified type of application (use beyond the scope of the marketing authorization; "off-label use"). Furthermore, a specialized need for consultation may arise if special conditions for the use of drugs are present. The pharmacy program coordinates the care of patients who have a special need for consultation, particularly due to the following conditions of use:
• Dysphagia (difficulty swallowing)
• Sialorrhea (uncontrolled salivation)
• Percutaneous endoscopic gastrostomy (artificial feeding by tube))
Complex and rare conditions may present special circumstances for counseling, creating special communication and psychosocial demands on the pharmacist and the pharmacy's technical infrastructure. The pharmacy program coordinates care for patients who have special counseling needs due to the following counseling circumstances in particular:
• restriction or loss of the patient's speech production in the counseling process
• loss of telephony and necessary use of digital media in counseling and further communication process
• locked-in syndrome (loss of mobility and communication with preserved intellectual functions)
Production of prescriptions
The production of prescriptions is one of the regular tasks of the pharmacist. A specialized need exists when rare prescriptions must be developed, manufactured, and stocked. Specifically, the pharmacy program coordinates the supply of patients who have a special need for the preparation and timely supply of prescriptions for the following groups of drugs:
• Anticholinergics for the treatment of sialorrhea
• Cannabis-containing medications for the treatment of crampi, spasticity and fasciculations
• 4-Aminopyridine-containing spasmolytics for the treatment of spasticity
• Dextromethorphan-containing medications for the treatment of motor disinhibition
Collaboration with care partners from other health care professions
Collaboration with members of other health care professions is a regular part of the pharmacist's role. For complex, rare, and chronic conditions, there is a special need for collaboration to provide counselling on drug risks and appropriate medication use. The pharmacy program coordinates care for patients where there is a special need for pharmacist coordination with care partners, such as PEG tube providers:
• Providers of PEG tubes: Drug administration via a PEG tube is an interdisciplinary task and requires special expertise of all parties involved, as medical, nursing and pharmaceutical aspects have to be considered. Optimally, patient-specific data collection, an assessment of the PEG suitability of the drugs by the pharmacist, and a final check and prescription by the physician are required. Specific advice to nursing and nutritional care providers by the pharmacist ensures proper handling of PEG probes and drug safety. Damaging placement of probes by medications can be prevented.
Registration and signing of several documents are required before participation in the pharmacy program - to ensure medical freedom of choice and data protection. For registration and the necessary documents, please join here: