Acute porphyria drug safety database now available in Spanish
Certain commonly prescribed medications may trigger symptom worsening
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The Global Porphyria Advocacy Coalition (GPAC) announced that an international database focused on the safety of medications for people with acute porphyria is now available in Spanish.
People with certain types of porphyria may experience attacks of worsening symptoms after using certain commonly prescribed medications. The Norwegian Porphyria Center (NAPOS) developed the NAPOS Safe Drug Database to help clinicians and people with acute porphyria determine which medications are safe to use.
“Language accessibility in critical pharmacological information is not simply a matter of convenience — it is a patient safety intervention,” Sue Burrell, president of GPAC, said in a press release from the organization. “This launch aims to support safer clinical decision-making and reduce inequities affecting Spanish-speaking communities living with porphyria.”
The launch coincided with Global Porphyria Day on May 18.
Database compiles information from clinicians worldwide
In porphyria, genetic mutations disrupt the body’s ability to produce heme, a molecule essential to many biological processes. Heme is a key component of hemoglobin, the protein that enables red blood cells to transport oxygen to tissues and organs. When heme production is impaired, precursor compounds accumulate while cells receive less oxygen, leading to a wide range of symptoms.
Acute porphyria is a form of the disease marked by sudden episodes of symptoms, known as attacks. Because heme production is reduced, the body may be less able to metabolize certain medications properly. In some individuals, these drugs can trigger acute attacks.
The NAPOS Safe Drug Database compiles information from clinicians worldwide, as well as case reports and published data, on the risk of attacks associated with different medications. It contains information on the four subtypes of acute porphyria — acute intermittent porphyria, variegate porphyria, hereditary coproporphyria, and ALA Dehydratase Deficiency Porphyria.
Direct Spanish-language access to an international technical reference will strengthen the ability of physicians, emergency teams and primary care professionals to respond appropriately in potentially critical situations affecting porphyria patients.
Clinicians and people with acute porphyria can look up medications using the online tool. The database classifies medications as non-porphyrogenic (not linked to attacks), porphyrogenic (documented links to attacks), or somewhere in between. It also notes if there is no data available about the safety of a certain drug for porphyria.
“Access to clear and reliable information can make a critical difference for people with acute porphyria, and no one should face barriers to essential health information,” said the International Porphyria Network (IPNET) Drugs Working Group. “We are pleased to see this resource become available in Spanish, helping to improve safety and confidence for patients and families globally.”
NAPOS created the database in 2002 as a reference for clinicians. In collaboration with IPNET and other groups, the organization expanded the tool for an international audience. It can help guide decision-making across healthcare settings, including primary and emergency care, according to GPAC. It was previously available in English.
GPAC led the translation effort, working with NAPOS, translators, and expert medical reviewers to ensure accuracy. A grant from Alnylam Pharmaceuticals, which markets the acute porphyria treatment Givlaari (givosiran), funded the project.
“Direct Spanish-language access to an international technical reference will strengthen the ability of physicians, emergency teams and primary care professionals to respond appropriately in potentially critical situations affecting porphyria patients,” said Kika Shabot, vice president of the GPAC and president of the Mexican Society for Porphyria.
