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‘How is your day?’

The initiative that shows how plasma protein therapies improve lives

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Plasma proteins help people with rare diseases live full lives. Why is the value and unique aspect of these therapies not better known?

For many of us, the question ‘how is your day?’ is a simple conversation we have with others. But no day is ordinary for thousands of people around the world who live with rare diseases and rely on plasma protein therapies for a stable life.

Plasma protein therapies are biologic medicines – derived from human plasma or recombinant analogues (that treat bleeding disorders) – that treat a range of life-threatening, chronic and genetic diseases. They bring life-saving treatment to patients worldwide who live with these conditions.

The benefits of plasma protein therapies are well-known to those who are closest to them. These are the specialist physicians who prescribe them, and the patients and their families whose lives they have transformed. But curiously, even as these proteins make a unique and valuable contribution to society in every country worldwide – and have brought better health to a growing number of people over the past three decades – the therapies remain relatively unknown in the public perception and on the global healthcare landscape.

The ‘How Is Your Day?’ initiative is global and seeks to increase awareness of the value and unique character of plasma protein therapies. This is the first effort of its kind to bring the plasma protein story to the world through the eyes of patients whose lives have been improved by plasma treatments.

‘How Is Your Day?’ brings together people who have been touched by plasma protein therapies. These are the patients whose lives are improved, medical professionals, international and local patient organisations, regulatory agencies and manufacturers of plasma  protein products.

The central message of ‘How is Your Day?’ is that more patients need to know that these therapies are available. Physicians need to be more aware of rare diseases that may hide behind recurring issues that some patients have. And that policymakers responsible for national health governance need to see the health benefits that these therapies bring to patients’ lives. These issues reinforce the global need for sufficient safe supplies of source plasma to ensure that patients always have access to the therapies they need.

The initiative links patients and producers to policymakers and the wider public. It shares patient stories and presents an evidence base to make the case for the value and importance that these therapies bring to patients and society. The stories show how a ‘normal day’ for most people – driving, walking, shopping, seeing friends, going to school or work – is a real gift for those who use plasma therapies to treat their conditions.

Take the example of Erica, a 31-year-old mother of two boys living with X-linked agammaglobulinemia (XLA). This condition causes chronic lung, ear and sinus infections. Thanks to plasma protein therapies, she says that she no longer worries that the boys will catch an illness that may land them in hospital during their normal daily activities. ‘’With plasma treatments they can go on holiday, play in the park, in public swimming pools or at birthday parties. They can do everything another mother wouldn’t have to think twice about doing with her kids,” she explains.

World champion cyclist Alex Dowsett lives with severe haemophilia. He also speaks for ‘How Is Your Day?’. Alex is an elite sports competitor who uses plasma protein therapies to stabilise his condition as he competes year-round across Europe with Team Katusha-Alpecin.

Yet, despite the life-changing impact that plasma proteins bring patients, they are not so visible on the global health landscape. Consequently, they are less understood, and their critical contribution to people’s health and well-being is less appreciated. ‘How Is Your Day?’ aims to change this perception. The initiative shows:

  • How plasma proteins are different from standard pharma products – their source materials can come only from human plasma donors
  • The value that these proteins bring to people living with life-threatening, genetic diseases – there are no non-plasma treatments available for most conditions
  • The importance of a need for national and regional strategies to ensure stable access to source plasma – countries need to plan for a growing population of people who can benefit from plasma.

Haemophilia is a condition that can be treated by both laboratory-produced recombinant plasma therapies or medicines made from donated plasma. But for the vast majority of conditions that plasma proteins treat, the only option for patients is medicines made from proteins that are provided by
plasma donors.

This means that adequate plasma supply from a committed community of donors is a critical resource for thousands of people worldwide who suffer from a range of serious conditions.

These are: Primary Immunodeficiency Diseases (PID – causes severe infections); Chronic Inflammatory Demyelinating Polyneuropathy (CIDP – causes of loss of limb function/disability); bleeding disorders (haemophilia and related conditions); Hereditary Angioedema (causes severe swelling that obstructs airways) and Alpha-1 Antitrypsin Deficiency (causes chronic emphysema and liver damage).

Jan M Bult is President and CEO of the Plasma Protein Therapeutics Association, the organisation charged with building global awareness of plasma protein therapies. He explains the unique aspects and policy context of plasma in the global health landscape. ’’Plasma-treatable conditions have a small patient population, so the issue for plasma protein therapies is smaller patient numbers, coupled with a supply and production process that is far more complex and costly than that of traditional pharmaceutical products. The value that these therapies provide to patients and their families is immense,’’ he says.

To help countries meet the needs of the growing population of European patients who could benefit from plasma proteins, Bult says that ‘How Is Your Day?’ is building a dialogue with policymakers. This effort is to help them appreciate how these therapies are fundamentally different from other pharmaceutical products. The initiative shares evidence that supports governments’ efforts to create practical sourcing polices that will improve access to plasma products.

Bult highlights two key issues for policy attention that will make a real difference for patients. First, the importance of early diagnosis to deliver the necessary treatment sooner to people with these conditions. Secondly, building strong links between donor and patient communities to secure stable source plasma access. ‘’Today, much of the world’s source of plasma comes from a small number of countries. We are engaging European policymakers by sharing examples and expertise to answer their questions on what is needed to deliver the best quality treatment to their citizens,’’ he explains.

As human donors are the only source of plasma for these therapies, each country faces the challenge of having a finite plasma supply. Each plasma donation only contains a small quantity of the proteins needed to produce a specific therapy. For example, some 130 donations provide enough immunoglobulin to treat one person with a primary immunodeficiency disease for one year; some 900 donations have sufficient Alpha-1 proteinase inhibitor to treat one person with Alpha-1 antitrypsin deficiency for one year; and 1,200 plasma donations ensure treatment for haemophilia for one year.

“‘How Is Your Day?’ aims to help decision-makers better understand and face these challenges by linking national planning to regional coordination,” says Bult. ‘’Countries are looking at how they can meet their source plasma needs. We encourage policymakers to cooperate with neighbouring countries to collect more plasma so patients everywhere will have better access to life-saving medicines,’’ he says.

While clear understanding of the plasma issues and policy action are keys to providing for the needs of those who need plasma protein therapies across Europe and worldwide, the perspective ultimately turns to the daily reality for people who have plasma protein deficiencies, and to their families – asking the simple question: ‘How Is Your Day?’

Hopefully, one day, the universal answer to this simple question  will be: “My day is great! And how is yours?”

‘How is Your Day?’ discovers how plasma protein therapies improve the lives of people, every day. For patient testimonials, videos, evidence and information, visit www.howisyourday.org and Facebook & Twitter @HIYDglobal

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