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Oyemam Autoimmune Foundation and Parliament of Ghana Advance National Advocacy to Make Lupus Visible

 

Source: Africa Publicity

Oyemam Autoimmune Foundation led a delegation of lupus advocates to the Parliament of Ghana in a significant step to elevate lupus and other autoimmune diseases on the national agenda. Organised by OYEMAM as part of its ongoing lupus awareness campaign in collaboration with Parliament, the visit underscored a growing national commitment to make lupus visible, improve patient support, and strengthen policy attention to autoimmune disease in Ghana.

The visit builds on a series of high-level advocacy engagements between OYEMAM and Parliament, including advocacy with Speaker Alban S. K. Bagbin; advocacy with Hon. Dr. Zanetor Agyemang-Rawlings; and the May 2025 World Lupus Day observance at Parliament House, where Hon. Dr. Zanetor Agyemang-Rawlings, as keynote speaker, called for stronger national support for people living with lupus and other autoimmune diseases, including improved financing for care through the National Health Insurance Scheme. The lupus visit also aligns with wider national efforts to address the burden of chronic illness through the Ghana Medical Trust Fund (GMTF) Act, 2025 (Act 1144), which captures autoimmune diseases under the interpretation of chronic disease. This inclusion was made possible through the strong advocacy of Hon. Dr. Zanetor Agyemang-Rawlings during the passing of the GMTF bill in Parliament in July 2025.

During the visit, the advocates were acknowledged by the Speaker and engaged with some Members of Parliament on the realities facing people living with lupus in Ghana. The delegation used the opportunity to amplify patient voices, deepen public understanding of the disease, and encourage stronger institutional support for timely diagnosis, treatment, and long-term care.

This landmark advocacy visit carried profound significance for the participants, many of whom live daily with the physical, emotional, and financial toll of lupus and related autoimmune diseases. Their presence in Parliament was not symbolic alone – it was an act of courage and resolve. Even while enduring varying levels of pain, they chose to stand publicly for change, determined to ensure that the suffering of people living with lupus in Ghana is no longer ignored. For some, the moment laid bare the devastating human cost of delayed support and unaffordable treatment.

One patient, overcome with emotion, spoke through tears about the crushing burden of treatment costs:

“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 GHS30,000 every couple of months.”

Her words captured the desperation many patients face when life-saving care remains far beyond their reach.

Although lupus, a debilitating autoimmune disease is affecting a growing number of people in Ghana, awareness remains dangerously low. Many patients face delayed diagnosis or misdiagnosis, harmful social misconceptions, and prohibitive out-of-pocket costs for tests, medicines, and specialist care. Access is further constrained by the severe shortage of rheumatology services, leaving many patients without the expert support they need to live with dignity and hope. Lupus continues to claim lives of Ghanaians especially women in their productive years.

Through sustained engagement with policymakers, health institutions, public and private-sector partners, Oyemam Autoimmune Foundation has become a leading voice for autoimmune disease advocacy in Ghana. Autoimmune diseases are non-communicable conditions in which the immune system mistakenly attacks healthy tissues and organs. The Foundation combines advocacy with public education, counselling, awareness campaigns, and medical support mobilisation for people affected directly or indirectly by autoimmune diseases, helping move lupus from the margins of public discourse to a matter of national health concern.

For OYEMAM, continued engagement with Parliament is essential to translating awareness into measurable policy and service delivery gains. With stronger partnerships and strategic investment, Ghana can expand public education, improve access to specialist care, support earlier diagnosis, and reduce the social and economic burden carried by patients and families.

Madam Emma Halm, Executive Director of Oyemam Autoimmune Foundation, expressed heartfelt gratitude to the Parliament of Ghana for its strong collaboration with the Foundation. She said the organisation remains committed to ensuring that no person living with lupus or any autoimmune disease in Ghana is left unseen, unheard, or unsupported.

“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 Executive Director of Oyemam Autoimmune Foundation reaffirmed the Foundation’s commitment to sustained advocacy, public education, patient support, and stakeholder collaboration across Ghana. As momentum grows around national recognition of lupus and autoimmune diseases, the Foundation is calling for greater partnership from institutions, philanthropies, and development actors to help expand this work and deliver lasting impact for patients and communities.

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