Lupus advocates take fight to Parliament, push for stronger support for patients

The Oyemam Autoimmune Foundation has led a delegation of lupus advocates to Parliament in a major effort to place lupus and other autoimmune diseases higher on Ghana’s national health agenda.

The visit, organised by the Foundation as part of its ongoing awareness campaign in collaboration with Parliament, sought to draw attention to the challenges faced by people living with lupus and strengthen calls for policy support, improved healthcare access and greater public awareness.

The engagement builds on a series of advocacy efforts by the Foundation with Parliament, including meetings with Alban S. K. Bagbin and Zanetor Agyeman-Rawlings.

It also follows the observance of World Lupus Day at Parliament House in May 2025, where Dr Zanetor Agyeman-Rawlings called for stronger national support for people living with lupus and other autoimmune diseases, including improved healthcare financing through the National Health Insurance Scheme.

The Foundation noted that the visit aligns with broader national efforts to tackle chronic illnesses through the Ghana Medical Trust Fund Act, 2025 (Act 1144), which recognises autoimmune diseases as chronic conditions.

The inclusion was secured following advocacy during parliamentary deliberations on the legislation.

During the visit, the advocates were acknowledged by the Speaker and engaged several Members of Parliament on the realities facing people living with lupus in Ghana.

The delegation used the opportunity to amplify patient voices and encourage stronger institutional support for early diagnosis, treatment and long-term care.

For many participants, the visit carried deep personal significance. Several advocates living with lupus shared their experiences of the physical, emotional and financial burden associated with the disease.

One patient, overcome with emotion, described the high cost of treatment and the hardship faced by many sufferers.

“I wish I could find a moving aeroplane to run over me. I don’t know whether I am dead or alive. No one in my family can afford this medication, which costs over GH¢30,000 every couple of months.”

The Foundation said the testimony highlights the severe challenges many patients face in accessing life-saving treatment.

Although lupus is affecting a growing number of people in Ghana, awareness remains low. Many patients experience delayed diagnosis or misdiagnosis, while the cost of specialist care, medications and laboratory tests remains beyond the reach of many families.

Access to care is further limited by a nationwide shortage of rheumatology services.

The Foundation has emerged as one of Ghana’s leading voices on autoimmune disease advocacy through public education campaigns, counselling services, awareness programmes and support initiatives for patients and their families.

Executive Director of the Foundation, Emma Halm, expressed appreciation to Parliament for its collaboration and reiterated the organisation’s commitment to ensuring that people living with lupus are not overlooked.

“Our goal is clear: to place autoimmunity on Ghana’s national agenda and to secure healthcare equity for people living with lupus and related conditions.

Patients urgently need access to diagnosis, treatment support, psychosocial care, and livelihood opportunities that protect their dignity.

With the right partnerships and investment, we can scale awareness, strengthen advocacy, and help build a more responsive system of care for thousands of families,” she said.

The Foundation says it will continue to engage policymakers, health institutions, and development partners to improve support systems for people living with lupus and other autoimmune diseases across the country.

المصدر: MyJoyOnline (GH)