Combating Stigma in Huntington’s Disease: A Focus on Sustainable Development Goals

Huntington’s disease (HD) patients frequently face stigma, which negatively impacts their well-being and social inclusion. At the 40th annual convention of the Huntington’s Disease Society of America (HDSA), held June 26-28 in Indianapolis, social workers Emily Zivin and Courtney Gatza highlighted the importance of building supportive communities and proactive communication to address this issue. Their discussion aligns closely with several Sustainable Development Goals (SDGs), particularly SDG 3 (Good Health and Well-being), SDG 10 (Reduced Inequalities), and SDG 16 (Peace, Justice, and Strong Institutions).

Understanding Stigma and Its Impact

1. Definition and Nature of Stigma: Health stigma involves labeling, bias, prejudice, stereotyping, and discrimination against individuals with medical conditions. It is a societal symptom affecting many diseases, including Huntington’s disease.
2. Sources of Stigma: Stigma can originate from various sources such as healthcare institutions, workplaces, acquaintances, family members, and media platforms.
3. Consequences of Stigma: Stigma leads to delayed medical treatment, employment discrimination, social isolation, and emotional distress, creating a vicious cycle that hinders effective disease management and social participation.
4. Complexity Due to Genetic Nature: As Huntington’s is a hereditary disorder, stigma also affects family planning decisions and genetic testing, adding layers of complexity to patients’ lives.

Strategies to Combat Stigma

Addressing stigma requires intentional efforts to foster empathy, understanding, and support within communities. The following strategies were emphasized:

• Building Loving Communities: Surrounding patients with empathetic individuals who understand their condition and offer support is crucial.
• Open Communication: Encouraging patients and families to share their experiences and needs openly helps reduce fear and misunderstanding.
• Owning the Narrative: Patients taking control of their story empowers them and diminishes the power of stigma.
• Proactive Sharing: Sharing personal stories and information about the disease prevents misconceptions and promotes awareness.
• Practical Communication Tools: Using general terms like “neurological disorder” or carrying ID cards provided by HDSA can facilitate smoother social interactions and reduce stigma.

Community and Audience Contributions

Participants at the HDSA convention contributed additional practical strategies to support people with Huntington’s disease:

• Holding family gatherings in accessible spaces to accommodate patients’ physical needs.
• Encouraging others to allow patients to speak without interruption or finishing their sentences.
• Addressing misconceptions about invisible symptoms by reminding others that many illnesses are not physically apparent but are nonetheless real.

Alignment with Sustainable Development Goals

The efforts to combat stigma in Huntington’s disease directly support several SDGs:

1. SDG 3: Good Health and Well-being
   • Promoting inclusive healthcare that respects the dignity of patients with neurological disorders.
   • Reducing barriers to timely medical treatment caused by stigma.
2. SDG 10: Reduced Inequalities
   • Addressing discrimination in employment and social settings.
   • Ensuring equal opportunities and social inclusion for people with disabilities.
3. SDG 16: Peace, Justice, and Strong Institutions
   • Fostering supportive communities that uphold justice and respect for individuals with health conditions.
   • Encouraging transparent communication and empowerment of marginalized groups.

Conclusion

Combating stigma associated with Huntington’s disease requires a multifaceted approach centered on empathy, community support, and proactive communication. These efforts not only improve the quality of life for individuals affected by HD but also contribute to the achievement of key Sustainable Development Goals by promoting health, reducing inequalities, and strengthening inclusive societies.

1. Sustainable Development Goals (SDGs) Addressed or Connected to the Issues Highlighted in the Article

1. SDG 3: Good Health and Well-being
   • The article focuses on Huntington’s disease, a neurological condition, and addresses health-related stigma, access to medical treatment, and mental health support.
2. SDG 10: Reduced Inequalities
   • The article discusses stigma and discrimination faced by people with Huntington’s disease, highlighting social exclusion and inequality.
3. SDG 16: Peace, Justice and Strong Institutions
   • Issues of discrimination in institutions such as healthcare centers and workplaces are raised, pointing to the need for inclusive and non-discriminatory institutions.
4. SDG 4: Quality Education
   • Emphasis on awareness, sharing experiences, and educating communities to combat stigma relates to inclusive education and awareness-raising.

2. Specific Targets Under Those SDGs Identified Based on the Article’s Content

1. SDG 3: Good Health and Well-being
   • Target 3.4: By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being.
   • Target 3.8: Achieve universal health coverage, including access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.
2. SDG 10: Reduced Inequalities
   • Target 10.2: By 2030, empower and promote the social, economic and political inclusion of all, irrespective of disability or health condition.
   • Target 10.3: Ensure equal opportunity and reduce inequalities of outcome, including eliminating discriminatory laws, policies and practices.
3. SDG 16: Peace, Justice and Strong Institutions
   • Target 16.b: Promote and enforce non-discriminatory laws and policies for sustainable development.
4. SDG 4: Quality Education
   • Target 4.7: By 2030, ensure that all learners acquire knowledge and skills needed to promote sustainable development, including human rights, gender equality, and promotion of a culture of peace and non-violence.

3. Indicators Mentioned or Implied in the Article to Measure Progress Towards the Identified Targets

1. Indicator for Target 3.4 (SDG 3):
   • Prevalence of stigma and discrimination among people with Huntington’s disease and other neurological disorders, as indicated by the statistic that about 97% of people with disabilities report experiencing discrimination.
   • Access to medical treatment and support services for people with Huntington’s disease, implied through discussions on delayed medical treatment due to stigma.
2. Indicator for Target 3.8 (SDG 3):
   • Availability and use of support resources such as HDSA Centers of Excellence and ID cards to facilitate access to healthcare and social support.
3. Indicator for Target 10.2 and 10.3 (SDG 10):
   • Levels of social inclusion and reduction in discrimination reported by people with Huntington’s disease in various settings including workplaces, healthcare, and social environments.
4. Indicator for Target 16.b (SDG 16):
   • Existence and enforcement of non-discriminatory policies in healthcare and employment institutions, implied by the need to address stigma institutional sources.
5. Indicator for Target 4.7 (SDG 4):
   • Effectiveness of educational and awareness programs in reducing stigma, as implied by the strategies shared at the HDSA convention for sharing experiences and educating communities.

4. Table of SDGs, Targets, and Indicators Based on the Article Analysis

Source: huntingtonsdiseasenews.com