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Infographic: Which Rare Diseases Are The Most Common?

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Rare Diseases Infographic

Infographic: Which Rare Diseases Are The Most Common?

Pharmaceuticals have come a long way since the apothecary days of prescribing cocaine drops for toothaches, or dispensing tapeworm diet pills.

Today, medical breakthroughs like antibiotics and vaccines save millions of lives, and contribute to the industry’s mammoth size. Yet even with rapid advancements, a select group of rare diseases still fly under the radar — and together, they affect over 350 million people worldwide.

What Are Rare Diseases?

Today’s infographic from Raconteur breaks down occurrence rates of notable rare diseases, and their collective impact on pharmaceutical drug sales. But first, let’s look at how they’re defined.

Diseases are considered rare, or “orphan” if they affect only a small proportion of the population. In general, it’s estimated that 1 in 17 people will be afflicted by a rare disease in their lifetime. At the same time, as many as 7,000 rare diseases exist, with more discovered every year.

A report by the global investment bank Torreya looks at the most common types of rare diseases that are a focus for therapeutic companies around the world:

  • Multiple sclerosis emerges above all others, at 90 patients per 100,000 people.
  • Narcolepsy—intermittent, uncontrollable episodes of sleepiness—affects 50 patients per 100,000.
  • Primary biliary cholangitis, the damage of bile ducts in the liver, affects 40 people in 100,000.
  • Rounding out the top five orphan diseases are Fabry disease (30 patients per 100,000), and cystic fibrosis (25 patients per 100,000).

One catch behind these stats? There’s actually no universal definition of what constitutes a rare disease. This means prevalence data like the above is often inconsistent, making it difficult to record the precise rate of natural occurrence.

The Cost of Rare Diseases

This gap in knowledge comes at a price—many rare diseases have constrained options for treatment. Orphan drugs are often commercially underdeveloped, as their limited end-market usage means they aren’t usually profitable enough for traditional research.

In the United States, government-backed incentives such as tax credits for R&D costs and clinical trials are speeding up the pathways from drug to market. Other places like the EU, Japan, and Australia are also following suit.

In total, it’s estimated that pharma companies focused on rare diseases are worth about half a trillion in enterprise value, roughly equal to 17.5% of the value of Big Pharma:

  • Non-oncology value: $315.7B
  • Oncology value: $193.1B
  • Total enterprise value: $508.8B

Source: Torreya Report. Market values are for the top 31 pure play rare disease therapeutic companies.

The average cost of an orphan drug per U.S. patient annually can climb to near $151,000 (a whopping 4.5 times that of a non-orphan drug, at $34,000). That’s why the pharma industry is urgently advancing rare disease therapeutics across different categories.

Dominant Orphan Drug Sales

According to other estimates, orphan drugs are set to capture over one-fifth of global prescription sales by 2024. Blood, central nervous system, and respiratory-related drugs are currently the top therapeutic categories and are expected to keep this status into the future.

The figures below break down global orphan drug sales by therapy category, and their present and estimated future market share. Note that oncology-related orphan drug sales are excluded from this table.

Therapy Category2018 SalesMarket Share2024E SalesMarket ShareChange in Market Share
Blood$21.3B31.4%$33.1B27.9%-3.4%
Central nervous system (CNS)$11.1B16.3%$20.3B17.1%0.8%
Respiratory$7.8B11.5%$13.6B11.5%0%
Immunomodulators$7B10.3%$12.5B10.5%0.2%
Cardiovascular$6.7B9.9%$8.5B7.2%-2.7%
Endocrine$3.8B5.6%$5.6B4.7%-0.9%
Musculoskeletal$3.5B5.2%$11B9.3%4.1%
Systemic anti-infectives$3.1B4.6%$4.2B3.5%-1%
Gastro-intestinal$2.9B4.3%$6B5.1%0.8%
Genito-urinary$0.6B0.9%$1.5B1.3%0.4%
Sensory organs$0.1B0.1%$1.5B1.3%1.1%
Dermatology$0B0%$0.7B0.6%0.6%
Total Sales$67.9B$118.5B

Source: EvaluatePharma. Industry sales are based on the top 500 pharma and biotech companies.

Much is still unknown about rare diseases in the health community. Frequent misdiagnosis, and up to an average of 8 years for an accurate diagnosis, continue to be a problem for patients.

There are two sides to the situation. On one, tech giants like Microsoft are providing digital health solutions to speed up diagnosis, through machine learning and blockchain-based patient registry.

On the other, many skeptics question whether the industry is interested in finding cures for rare diseases at all, especially when they account for a significant portion of industry revenues.

Is curing patients a sustainable business model?

Goldman Sachs

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Mapping Global Income Support During COVID-19

The need for income support during COVID-19 has been vast. This map visualizes different levels of income support around the world.

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income support during COVID-19

Mapping Global Income Support During COVID-19

Income loss has impacted many during the COVID-19 pandemic. Unemployment, reduced hours, office closures, and business shutdowns have prompted the need for mass income support.

Globally, income from work fell $3.5 trillion in the first nine months of 2020, a change of -10.7% compared to the same period in 2019.

In the above map, Our World in Data reveals the different levels of income support provided by governments across the globe.

Income support, in this case, is defined as governments broadly covering lost salaries, or providing universal basic income or direct payments to people who have lost their jobs or cannot work. Levels of income support are changing over time.

Small Government

Many world governments have provided no support when it comes to a universally applicable scheme to cover lost income in their countries.

Examples: (as of January 25th, 2021)

  • 🇻🇪 Venezuela
  • 🇸🇾 Syria
  • 🇧🇾 Belarus
  • 🇧🇩 Bangladesh
  • 🇰🇭 Cambodia

The majority of the governments providing no support are in low to lower-middle income countries. Based on a recent report from the International Labour Organization (ILO), lower-middle income countries have also seen the highest income losses, reaching 15.1% since 2019.

Developing countries tend to experience a significant fiscal stimulus gap, in which they do not have the capacity to cushion lost income or lost jobs. In fact, it’s estimated by the ILO that low and lower-middle income countries would need to inject an additional $982 billion into their economies to reach the same level of fiscal stimulus as high income countries.

A Helping Hand

There are other governments that are giving out some help on a wide-scale basis, providing citizens less than 50% of their lost salaries:

Examples: (as of January 25th, 2021)

  • 🇿🇦 South Africa
  • 🇨🇳 China
  • 🇷🇺 Russia
  • 🇹🇭 Thailand
  • 🇦🇺 Australia

South Africa’s unemployment rate was the highest in the world at 37.0% in 2020, an increase from 28.7% in 2019. Despite having one of the strictest lockdowns, the country has not been able to slow rising case counts or job losses. Now, South Africa is facing another threat, as a new strain of the novel coronavirus has taken hold in the nation.

The Most Supportive Governments

Finally, many world governments have offered higher amounts of income support, providing citizens with more than 50% of lost income:

Examples: (as of January 25th, 2021)

  • 🇨🇦 Canada
  • 🇺🇸 United States
  • 🇬🇧 United Kingdom
  • 🇪🇸 Spain
  • 🇸🇦 Saudi Arabia

Regionally, it’s the Americas that have been hit the hardest, according to the ILO. The region experienced a 12.1% drop in labor income in 2020 compared to 2019, revealing the need for broad-based income support.

U.S. unemployment went from 3.7% to 8.9% between 2019 and 2020. While the American government initially provided support in the form of the CARES Act, the policy response was recently extended through the more recent $900 billion relief deal.

Income Support Post COVID-19

While some countries have not been in extreme need of income support, others have been and haven’t received it. When looking at demographics, the hardest hit workers have been temporary workers, migrant workers, care workers, and self-employed vendors who have no labor contracts or employment insurance.

As a result, some critics have used this as an opportunity to call for universal basic income (UBI). A three-year study is already being implemented in Germany, for example, to test out how effective this kind of income support would be in the post-pandemic period.

Today, however, income is not a guarantee, and while in 2021 things may be returning to ‘normal,’ that does not mean that income levels will go back to normal.

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Visualized: A Global Risk Assessment of 2021 And Beyond

Which risks are top of mind in 2021? We visualize the World Economic Forum’s risk assessment for top global risks by impact and livelihood.

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Visualized: A Global Risk Assessment of 2021 And Beyond

Risk is all around us. After the events of 2020, it’s not surprising that the level and variety of risks we face have become more pronounced than ever.

Every year, the World Economic Forum analyzes the top risks in the world in its Global Risks Report. Risks were identified based on 800+ responses of surveyed leaders across various levels of expertise, organizations, and regional distribution.

Which risks are top of mind in 2021?

The World’s Top Risks by Likelihood and Impact

According to WEF’s risk assessment methodology, all the global risks in 2021 fall into the following broad categories:

  • 🔵 Economic
  • 🟢 Environmental
  • 🟠 Geopolitical
  • 🔴 Societal
  • 🟣 Technological

It goes without saying that infectious diseases have now become one of the top societal risks on both metrics of likelihood and impact.

That said, environmental risks continue to dominate the leaderboard, accounting for five of the top 10 risks by impact, especially when it comes to climate action failure.

Several countries are off-track in meeting emissions goals set by the Paris Climate Agreement in 2015, while the pandemic has also delayed progress in the shift towards a carbon-neutral economy. Meanwhile, biodiversity loss is occurring at unprecedented rates.

RankTop Risks by LikelihoodTop Risks by Impact
#1🟢Extreme weather🔴Infectious diseases
#2🟢Climate action failure🟢Climate action failure
#3🟢Human environmental damage🟠Weapons of mass destruction
#4🔴Infectious diseases🟢Biodiversity loss
#5🟢Biodiversity loss🟢Natural resource crises
#6🟣Digital power concentration🟢Human environmental damage
#7🟣Digital inequality🔴Livelihood crises
#8🟠Interstate relations fracture🟢Extreme weather
#9🟣Cybersecurity failure🔵Debt crises
#10🔴Livelihood crises🟣IT Infrastructure breakdown

As for other risks, the prospect of weapons of mass destruction ranks in third place for potential impact. In the global arms race, a single misstep would trigger severe consequences on civil and political stability.

New Risks in 2021

While many of the risks included in the Global Risks Report 2021 are familiar to those who have read the editions of years past, there are a flurry of new entries to the list this year.

Here are some of the most interesting ones in the risk assessment, sorted by category:

Societal Risks

COVID-19 has resulted in a myriad of knock-on societal risks, from youth disillusionment and mental health deterioration to livelihood crises. The first two risks in particular go hand-in-hand, as “pandemials” (youth aged 15-24) are staring down a turbulent future. This generation is more likely to report high distress from disrupted educational and economic prospects.

At the same time, as countries prepare for widespread immunization against COVID-19, another related societal risk is the backlash against science. The WEF identifies vaccines and immunization as subjects susceptible to disinformation and denial of scientific evidence.

Economic Risks

As monetary stimulus was kicked into high gear to prop up markets and support many closed businesses and quarantined families, the economic outlook seems more fragile than ever. Debt-to-GDP ratios continue to rise across advanced economies—if GDP growth stagnates for too long, a potential debt crisis could see many businesses and major nations default on their debt.

With greater stress accumulating on a range of major industries such as travel and hospitality, the economy risks a build-up of “zombie” firms that drag down overall productivity. Despite this, market valuations and asset prices continue to rise, with equity markets rewarding investors betting on a swift recovery so far.

Technological Risks

Last but not least, COVID-19 has raised the alert on various technological risks. Despite the accelerated shift towards remote work and digitalization of entire industries, the reality is that digital inequality leaves those with lower digital literacy behind—worsening existing inequalities.

Big Tech is also bloating even further, growing its digital power concentration. The market share some companies hold in their respective sectors, such as Amazon in online retail, threatens to erode the agency of other players.

Assessing the Top 10 Risks On the Horizon

Back in mid-2020, the WEF attempted to quantify the biggest risks over an 18-month period, with a prolonged economic recession emerging on top.

In this report’s risk assessment, global risks are further classified by how soon their resulting threats are expected to occur. Weapons of mass destruction remain the top risk, though on a much longer scale of up to 10 years in the future.

RankRisk%Time Horizon
#1🟠Weapons of mass destruction62.7Long-term (5-10 years)
#2🔴Infectious diseases58Short-term risks (0-2 years)
#3🔴Livelihood crises55.1Short-term risks (0-2 years)
#4🔵Asset bubble burst53.3Medium-term risks (3-5 years)
#5🟣 IT infrastructure breakdown53.3Medium-term risks (3-5 years)
#6🔵Price instability52.9Medium-term risks (3-5 years)
#7🟢Extreme weather events52.7Short-term risks (0-2 years)
#8🔵Commodity shocks52.7Medium-term risks (3-5 years)
#9🔵Debt crises52.3Medium-term risks (3-5 years)
#10🟠State collapse51.8Long-term (5-10 years)

Through this perspective, COVID-19 (and its variants) remains high in the next two years as the world scrambles to return to normal.

It’s also clear that more economic risks are taking center stage, from an asset bubble burst to price instability that could have a profound effect over the next five years.

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