Honourable senators, I rise today as the friendly critic of Bill S-201, An Act respecting a national framework on sickle cell disease, introduced by Senator Mégie.

Before I speak to the bill’s substance, I want to take a moment to recognize Senator Mégie as she prepares to retire this September. Throughout her time in this chamber, she has been a tireless advocate for improved health care access, especially for under-represented communities. Her contributions to parliamentary work, particularly in health, have been meaningful and deeply appreciated. We will certainly miss her thoughtful voice at committee and in this chamber.

I also want to acknowledge the efforts of our now-retired colleague Senator Jane Cordy who advanced awareness of sickle cell disease, or SCD, by successfully sponsoring Bill S-211 in 2017. It designated June 19 as National Sickle Cell Awareness Day in Canada. Thanks to her leadership, this chronic and painful disease has begun to gain the attention it deserves within the broader national health discourse.

As a non-medical person, I leave the description of SCD and all the complications that come with it to our esteemed colleagues with medical backgrounds. I will not repeat the information that they have so eloquently provided in the speeches they delivered in previous sittings. We heard from Senator Mégie and Senator Ravalia. Instead, I would like to speak on this bill as a staunch advocate of human rights: a voice for Canadians living with sickle cell disease, or SCD, whose suffering has long been overlooked.

Growing up in Pakistan, I heard very little discussion about SCD. Even though I grew up in a family of doctors — my grandfather, mother-in-law and many other family members are all doctors — I had never heard about the disease until Senator Mégie talked about it and got me researching. To my surprise, I found out that SCD is not uncommon in Pakistan, and that sickle cell trait is found in 0.9% of the Pakistani population, which translates to over 2 million people. What’s even more surprising to me is that it is found in my own province and people in Khyber Pakhtunkhwa, as well as in Balochistan. This has been particularly educational, and I would like to thank Senator Mégie for getting me into this.

With Bill S-201, we are not simply dealing with a piece of legislation. We are bringing to light a matter of human rights, social justice and human dignity.

Every individual, regardless of race, geography or socio-economic status, has, according to the World Health Organization, “. . . the right to the highest attainable standard of physical and mental health. . . .” Yet people living with SCD remain trapped in a cycle of pain, stigma and neglect. A bill that seeks to develop a national framework to support Canadians with SCD is our collective moral and constitutional response to this injustice.

This framework is about justice: for the mother who buries her child before his fifth birthday due to the lack of timely interventions; for the adult whose chronic pain is dismissed as drug-seeking behaviour rather than a result of a lifelong disease; and for those who live in scarcity because their pain prevents them from keeping a job that might help them move up the socio‑economic ladder.

Passing a bill such as this is our way of affirming that health is not a privilege but a right.

In Canada, SCD predominantly affects people of African, Caribbean, Middle Eastern and South Asian descent. When racialized communities bear the brunt of a serious chronic condition with limited national response, it signals a deeper neglect of their health and dignity. It reflects a pattern of systemic inequality and of whose suffering we dignify and whose we ignore.

Canada’s rich diversity is strengthened by immigration. With the growth in populations of newcomers from regions where SCD is highly prevalent comes an increase in the number of Canadians affected by the disease. Yet our health care system has not kept pace. Without a national framework, we risk failing to provide culturally competent care, early screening and equitable access to treatment for thousands of families. This is clearly a growing public health concern that intersects with matters of immigration, racial equity and health care planning.

Another sad reality is that in Canada, access to treatment for SCD far too often depends on one’s postal code or paycheque. While some urban areas offer specialized care and newer therapies, many patients, especially in smaller provinces, rural areas or low-income households, face long wait times, travel burdens and prohibitive out-of-pocket costs for essential medications and pain management. Advanced treatments remain financially out of reach for many. This is clearly a crisis for a public health care system that allows life-saving care to be determined by income or geography.

Establishing a national strategy for SCD is not only a step toward better health outcomes but also a necessary act of justice and inclusion for those our systems have historically failed. It’s about stopping a genetic disease from deepening the fault lines of health inequality in our country. It’s about showing every Canadian that we value our people equally, unapologetically and without reservation.

From a human rights perspective, a national framework on sickle cell disease is a no-brainer. Yet as critic of the bill, I would be remiss if I didn’t talk about a few areas that may benefit from further examination during committee study.

One key area for reflection is how Bill S-201 aligns with other federal initiatives already under way. For instance, the federal government has launched a National Strategy for Drugs for Rare Diseases, announced in March 2023, which includes $1.5 billion in funding over three years. Although SCD is not named explicitly, it meets the criteria to be included under this umbrella. Provinces like Ontario and British Columbia have already signed bilateral agreements under this strategy. As such, it may be helpful for the committee to explore how this proposed framework would interact with, support or build upon existing efforts to ensure efficiency and cohesion.

Additionally, we might consider whether a disease-specific framework is the most effective path forward or whether integrating SCD into the broader national rare disease strategy would provide a more inclusive and scalable approach. Many rare diseases — including SCD — face common barriers such as delayed diagnosis, insufficient provider education and patchy access to treatment. An integrated model may help prevent the fragmentation of care and allow for more comprehensive investment in shared infrastructure.

Regardless of the path chosen, what remains clear is that the lived experience of people with SCD in Canada demands greater attention. For too long, patients have struggled to navigate a health care system that often fails to recognize their symptoms and delays critical interventions.

In exploring how to strengthen care for individuals living with sickle cell disease, it might be instructive to consider the success of the cystic fibrosis, or CF, community in Canada. CF, like SCD, is a serious genetic disorder that affects a relatively small patient population but requires lifelong, multidisciplinary care. Over time, the CF community has developed a robust national network of accredited care centres, supported by standardized treatment protocols, comprehensive data collection through the Canadian Cystic Fibrosis Registry and active patient advocacy.

These efforts have translated into measurable improvements in life expectancy, quality of care and timely access to new therapies. A similar approach for SCD, anchored by coordinated care centres, a national patient registry and shared clinical guidelines, could help ensure consistent standards across provinces and reduce inequities in diagnosis and treatment. Moreover, the CF model demonstrates the value of federal-provincial collaboration, outcome tracking and strong community engagement elements that could be thoughtfully adapted to meet the specific needs of the SCD population, particularly with attention to cultural competency and health equity.

To date, much of the advocacy and support for individuals living with SCD has been carried out by dedicated community organizations like the Sickle Cell Disease Association of Canada, the Sickle Cell Awareness Group of Ontario, the Association d’anémie falciforme du Québec and the Sickle Cell Foundation of Alberta, as well as community leaders and health care professionals in British Columbia and Nova Scotia. These groups have been the backbone of patient advocacy, operating with tremendous resolve. Any national framework must recognize and integrate their expertise and leadership to ensure that policy solutions reflect lived realities on the ground.

National frameworks, when thoughtfully designed and well supported, can play an important role in shaping priorities and fostering collaboration across jurisdictions. They help create common goals, bring visibility to underserved health issues and provide a structure for aligning federal, provincial and community efforts. Importantly, a national framework on sickle cell disease has the potential to give voice to individuals and families who have long felt overlooked in our health care system. By centring their lived experiences, we can ensure the resulting policies are not only inclusive but also responsive to the real challenges they face every day.

As Bill S-201 moves to committee, I look forward to a careful and thoughtful study of the bill and to hearing from a range of voices, including clinicians, advocates, researchers and — most importantly — people living with sickle cell disease. Their testimony will be essential in guiding how this framework can be shaped to make a meaningful and lasting difference.

Thank you to Senator Mégie for bringing forward this timely and necessary bill, and for helping ensure that sickle cell disease receives the national attention it deserves.