Coaching and support
In this section of the Myeloma Access Atlas, you will find tools to help you to define, create and implement an advocacy strategy to identify and tackle the most important access issues in your country.
Most importantly, the Atlas Coaching Programme accessible in the left-hand menu is an online tool which MPE members and other advocates can complete online to generate a complete access strategy. The data contained in the initial sections of the Myeloma Access Atlas can also be used to help you identify what your advocacy priorities might be.
You will also find information in this section on the work MPE is developing to promote peer-to-peer support and regional collaboration on access issues.
One-to-one support for advocacy organisations and advocates
It is important to note that myeloma and AL amyloidosis advocacy organisations and advocates can get in touch with MPE at any time to discuss and problem solve identified access challenges.
As examples, we can help you:
- Implement a strategy you have generated through the Atlas Coaching Programme.
- Research and understand an access issue, including root causes.
- Develop a tailored strategy to address the problem.
- Provide information on clinical trials and medicines in myeloma and AL amyloidosis.
- Provide or source information on European and national drug approval.
- Design patient and carer evidence collection strategies to inform reimbursement and HTA decisions.
- Escalate issues and write letters of support, where we deem it appropriate to do so.
To access this type of support, please email firstname.lastname@example.org and speak to a member of the MPE Access Team.
Priority issue: In country X, there are problems accessing off-patent medicines for the treatment of myeloma.
Root cause 1: Per capita health expenditure is low, so health system cannot afford to pay for new drugs.
Root cause 2: Pharmaceutical companies producing medicines do not prioritise country X for reimbursement.
Root cause 3: Price of generics, whilst cheaper than branded product, still costs 2 x average weekly salary of residents.
Advocacy: Advocacy can have different meanings across countries and contexts. For the purposes of this workbook, advocacy is defined as the deliberate process of informing and influencing decision-makers and their influencers in support of evidence-based change.(Adapted from: Stronger Health Advocates Greater Health Impacts)
Here you can find examples of regular access challenges advocates face in their country.
Barriers to myeloma diagnosis
- Low awareness among general practitioners (GPs) and family doctors.
- Non-specific symptoms.
- Lack of symptom awareness in patients.
- Lack of medical training on rare diseases.
- Access to diagnostic tests.
- Institutional and administrative barriers.
Barriers to myeloma treatment and care
- High cost of new drugs.
- Slow approval of new drugs.
- Lack of clinical trials.
- Drug shortages.
- Lack of availability of existing/older drugs.
- Lack of rehabilitation programmes.
- Institutional and administration barriers.
For more detailed information on your country and to compare it to other European countries check the Atlas at: https://www.mpeurope.org/atlas/
Here are some helpful tips on developing your advocacy goals.
Keep in mind that there are several types of goals depending on the type of change you want to achieve.
Some ideas are:
- Discursive change: changes in the words, narrative and concepts used
- Example: A Minister of Health starts placing emphasis on inequities in his speeches.
- Procedural change: changes in the way things are done
- Example: Government policies are made through broad-based consultations with all stakeholders, including patient groups.
- Attitudinal change: changes in attitudes towards other actors or their values and causes
- Example: Government treats patient groups as relevant actors contributing with a particular expertise.
- Content change: actual changes in the strategy or policy documents or budgets
- Example: Legislation enacted to make details of HTA process and decisions easily available.
- Behavioural change: permanent changes in the way individuals or organisations act or behave
- Example: Patient groups are systematically included in the definition of policy priorities.
Here are some examples of SMART goals.
Examples of SMART goals:
- Related to raising awareness:
- “To increase media coverage on difficulties accessing drug x, ensuring a least three publications in the national press on this topic in the first quarter of 2020.”
- Related to educating healthcare professionals:
- “To reach 1,000 GPs and family doctors with a campaign flyer on the signs and symptoms of myeloma during 2020.”
- Related to promoting policy actions:
- “Ensure that the new European Cancer Plan includes specific plans to improve the diagnosis of myeloma, derived in collaboration with the myeloma patient community.”
Decision-makers: People with the formal power or authority to make the desired policy change and/or their key advisors or staff. (PATH - Policy Advocacy for Health - Part 3: Decision-makers and Influencers)
Influencers: People or groups who can have a compelling force on the actions, opinions, or behavior of decision-makers.
Partner: An organisation/person that aligns with your advocacy goal and collaborates with you in order to reach it.