Sickle Cell Disease Association co-founder awarded Meritorious Service Medal

Sickle Cell Disease Association co-founder awarded Meritorious Service Medal

By Lincoln DePradine

Sickle Cell Disease (SCD) patients – a large percentage of them sub-Saharan Africans and people of African descent in the Diaspora – are welcoming news of a few breakthrough treatments for the illness.

Lanre Tunji-Ajayi

However, the Casgevy and Lyfgenia treatments have been approved for use in the United States but not in Canada. Neither has a similar treatment, CRISPR, which is being made available in Britain, has been accepted as yet by the Canadian government.

Lanre Tunji-Ajayi, founder and president of the Sickle Cell Awareness Group of Ontario (SCAGO), plans on lobbying authorities here to have them approve the treatments for use by SCD patients in Canada.

“The groundwork has started on getting the government here in Canada to approve the treatments. The one thing, though, is around the price point for the therapies to make them accessible,’’ said Tunji-Ajayi, who recently visited Rideau Hall in Ottawa to receive a Meritorious Service Medal (MSM) from Governor General Mary Simon.

She was one of 49 Canadians to receive the MSM. Governor General Simon presented 13 others with Meritorious Service Crosses.

Governor General Mary Simon

“The honour was conferred on me two years ago but due to COVID 19, they only now held the ceremony,’’ Tunji-Ajayi told The Caribbean Camera.

She was cited as an MSM awardee for playing “a key role in demystifying sickle cell anemia in Canada. Actively involved in the cause, she co-founded and served as the first president of the Sickle Cell Disease Association of Canada, where she ensured newborn screening in many provinces and, together with federal parliamentarians, helped to create National Sickle Cell Awareness Day, held each year on June 19, since 2018’’.

The receipt of the MSM was “really an honour’’, Tunji-Ajayi said.

SCAGO, like other groups such as the Sickle Cell Association of Ontario and the Dotty Nicholas Sickle Cell Scholarship Fund Association, is one of the several Canadian organizations dedicated to helping SCD patients – many of them young students – and their families, and involved in promoting awareness and treatment of the disease.

SCD was first described by a medical intern after examining a Grenadian dental student Walter Clement Noel, who was admitted to the Chicago Presbyterian Hospital in the United States 1904 suffering from anemia.

With SCD, a mutation causes red blood cells to develop a crescent or “sickle” shape. These sickled red blood cells restrict the flow in blood vessels and limit oxygen delivery to the body’s tissues, leading to severe pain and organ damage called vaso-occlusive events (VOEs) or vaso-occlusive crises (VOCs).

SCD patients often require continuous blood transfusions and frequently have to miss work and school.

The recurrence of SCD crises can lead to life-threatening disabilities and/or early death.

Casgevy, Lyfgenia and CRISPR represent the first cell-based gene therapies for the treatment of SCD in patients 12 years and older.

Casgevy and Lyfgenia, according to US manufacturers, are made from the patients’ own blood stem cells.

The cells then are modified and given back as a one-time, single-dose infusion as part of a blood stem cell transplant.

Prior to treatment, a patient’s own stem cells are collected. The patient, subsequently, must undergo chemotherapy to remove cells from the bone marrow, so they can be replaced with the modified cells in Casgevy and Lyfgenia.

Patients who received Casgevy or Lyfgenia will be followed in a long-term study to evaluate each product’s safety and effectiveness. 

Tunji-Ajayi, in commenting on the new stem cell therapies, said Casgevy “is priced about $2.1 million per patient and Lyfgenia is priced at $3.1 million’’.

Up to now, the lifetime cost for treating an SCD patient has been about $8 million, she explained.

“So, $2 million compared to $8 million is still not bad. And, patients can be cured now and they’ll be able to be contributing members of the community, lift their lives and do well in life,’’ Tunji-Ajayi said.