Sickle Cell Disease

An estimated 100,000 people in America have sickle cell disease (SCD), a genetic blood disorder that affects red blood cells’ ability to travel throughout the body and deliver oxygen to organs.

People with SCD often face regular crises of severe body pain, organ damage, and a shortened lifespan.

The condition disproportionately impacts African Americans, and many online communities consider this in their advocacy efforts that aim to reduce stigma a

Search Trends

The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.

It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.

This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic. 

Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.

When people are looking to manage sickle cell disease (SCD), what are the drugs they’re thinking about?

What comes up when people search for sickle cell disease drugs?

Search interest for what is a sickle cell crisis grew 199% over the last 3 months, from May 2022 to July 2022.

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1. Times of crisis: SCD strikes in painful ways

Those with the genetic blood disorder sickle cell disease (SCD, also known as sickle cell anemia) can periodically experience very intense episodes of severe pain throughout their bodies. The pain stems from the sickle-shaped red blood cells blocking blood flow to tissues to the point that they become deprived of oxygen. It can often bring them to the hospital for pain relief, and can set the stage for further health complications such as arthritis, kidney failure, and strokes. 

Searches were steadily increasing for this term across the past three months, as was the related search for it’s synonym “vaso-occlusive crisis.” This increase in search interest may be explained by the increase in public dialogue and awareness about SCD around June 19, which is World Sickle Cell Day.

2. Testing to reveal SCD or its genetic trait

Searches for sickle cell solubility testing increased over the past three months. The test screens for both sickle cell disease (SCD) and the sickle cell trait (SCT) – the former being a medical condition and the latter indicating that one carries the genetic trait for SCD. Individuals with SCD have received two copies of the abnormal hemoglobin S gene – one from each parent – and so it is important for many people belonging to groups that are disproportionately impacted by the trait to understand their status. 

This search may also be linked to competitive sports, as the National Collegiate Athletic Association (NCAA) recently made it a requirement for new athletes to declare their test results

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Search interest for sickle cell solubility test grew by 83% over the last 3 months, from May 2022 to July 2022.

Search interest for sickle cell cure grew by 44% over the last 3 months, from May 2022 to July 2022.

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3. Cure is rare, search is common

Searches inquiring about a cure for SCD were up across the past three months.  The only known cures for the condition are stem cell or bone marrow transplants (typically from a sibling), however, these are rarely carried out because of the significant risks involved and the barriers associated with finding a suitable donor. 

There may also be ongoing enthusiasm for therapeutic interventions that aim to cure SCD. For example, in December of 2021, researchers from UCSF Benioff Children’s Hospital Oakland received $17 million to support a trial for its gene-editing technology that uses patients’ own blood stem cells to correct the mutated gene that causes SCD.

4. A looming threat to longevity

SCD is, unfortunately, known to reduce the lifespan of patients, and searches for SCD life expectancy have grown across the past three months. Life expectancy for those with SCD living in developed countries ranges from 40-60 years on average. In the US, life expectancy for men with the condition is about 42 and for women it’s about 48. 

SCD can affect anyone, but it is the most common genetic disorder among African Americans, with approximately 8% being carriers of the sickle cell trait (vs. about 0.01% incidence in the total US population). About 1 in 375 African Americans are born with SCD. Patient advocates have argued that disparities in health status that African Americans experience (including barriers to accessing care and SCD getting less research funding) have contributed to the decreased life expectancy among those with SCD.

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Search interest for sickle cell life expectancy grew by 36% over the last 3 months, from May 2022 to July 2022.

Search interest for hydroxyurea for sickle cell grew by 26% over the last 3 months, from May 2022 to July 2022.

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5. Hydroxyurea helps those with SCD

Searches for the drug hydroxyurea (brand names: Droxia, Hydrea, Siklos) have increased across the past three months, with the greatest volume of searches coming from Texas. Hydroxyurea is among the most popular drugs prescribed to manage SCD.

The drug works by making red blood cells bigger, and supporting them in staying rounder and more flexible. This benefits SCD patients as these cells are less likely to turn into a sickle shape.

Sickle Cell Disease in Culture

The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.

By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them. 

Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.

1. TikTok video addresses SCD misconceptions

Sickle Cell 101 has created an extensive online community and health resource for those living with SCD. Their June 13 TikTok video has been viewed 12.6K times, and aims to dispel some of the common misconceptions that HCPs have about patients with sickle cell disease. This video addresses common grievances that those with sickle cell have with HCPs, including not being believed about their levels of pain and being suspected as seekers of unnecessary pain medications. The majority of their social media following is on Instagram (@sicklecell101), where they have 61.5K followers, however, the majority of their posts there feature their TikTok videos. Online communities such as Sickle Cell 101 are important resources that support the emotional well-being of SCD patients.

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2. Finding community and sharing experiences living with SCD

This online community of almost 5.5K followers on Instagram (@sicklecellspeaks) focuses on advocacy and support. Despite the fact that SCD is an inherited genetic disorder, many of those with SCD feel that their condition is stigmatized in US society. One of the goals of Sickle Cell Speaks is to address some of the misconceptions about SCD (e.g. that it is contagious, that people with the conditions are drug addicts). Sickle Cell Speaks regularly features personal stories of people living with the condition to emphasize how they found strength, and how they navigated the condition’s many challenges. Their page has a link to their website which offers practical information and resources such as local events, support, and guidance in finding a specialist. This online community offers patients a glimpse into the lives of others with SCD, thus normalizing a lot of their shared experiences. 

3.  Advocate raises awareness while supporting patients and caregivers

This Maryland-based advocate, author and podcaster has largely focused her public engagement on the topic of SCD. Elle Cole’s Twitter account Cleverly Changing (@cleverlychangin) has 11K followers, and she posts hundreds of tweets per month to raise awareness on SCD and inspire patients, caregivers and other advocates. She interviews guests regularly on the topic of SCD, posting her YouTube videos on her Twitter feed.

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4. NFL star’s reflection on scuffle prompts new interest in SCD

Many people who were searching for SCD also searched for retired NFL star, Ryan Clark. The search term “ryan clark sickle cell’ was trending in searches across the past three months, peaking July 4. This can be linked to an interview he recently had on the podcast he co-hosts (@thepivot on TikTok and Twitter) featuring his former head coach – someone he had a very public and heated discussion with during his time playing for the Steelers. His coach removed him from an important game in 2012 out of concern for his health (Clark has the sickle cell trait (SCT) which can sometimes cause complications or death with strenuous exercise; Clark had already lost his gallbladder and spleen due to extreme pain from the condition). SCT is not considered a disease like SCD, but many people cannot distinguish between the two. This discussion generated interest for SCD more widely, which is reflected in recent search trends around the condition. Public figures can raise public awareness and understanding about sickle cell conditions.

5. Taking to TikTok on World Sickle Cell Day

Every year on June 19, World Sickle Cell Day is observed, and many SCD patients used TikTok to raise awareness, build community, and report on their progress or struggles. A United Nations-recognised day to raise awareness of sickle cell across the globe, this date commemorates the day when SCD was recognized as a UN public health concern. Visibility and public understanding of SCD is important to those with the condition, as it combats stigma and increases public empathy.

It is important to note that June 19 is also Juneteenth in the US. The holiday both acknowledges the end of slavery in the US and celebrates the great and many achievements of African Americans. Since SCD disproportionately affects this population, it is fortuitous that the two occasions are marked on the same day.