A Small but Meaningful Chance: How One Family's Donation Gave Us Hope for Treatment

This story comes from a family in Russia who faced a difficult cancer diagnosis and an even more challenging journey to access treatment. 

The medicine they needed was not available in their country, but through the support of another patient’s family—who had accessed the medicine through Everyone.org before their loved one tragically passed away—the family was able to receive a vital donation. Everyone.org facilitated this process, helping to ensure the treatment didn’t go to waste and giving the patient a fighting chance in the face of cancer.

Could you share a little background about the patient’s diagnosis and treatment?

The preliminary diagnosis of intrahepatic cholangiocarcinoma (ICCA) T4N1M1 was made on August 11, 2024. The histological examination results were received on August 15, 2024, followed by an immunohistochemical study on August 19, 2024. 

A molecular genetic study and partial genomic sequencing were completed on September 11, 2024, revealing an FGFR2 rearrangement. The patient began treatment. Later, on September 23, 2024, the patient started an additional therapy, but unfortunately, no significant effect has been observed so far.

How did you find out about Everyone.org and treatment options that aren’t available in your country?

We found out about Everyone.org through online research while researching a medicine. Although some treatment options are difficult to access in Russia, they are known within scientific and medical communities, as well as patient support groups.

What was the process you had to go through to be able to get the medicine you needed in Russia?

Since the medicine is not registered in Russia, obtaining it is a challenge. However, patient communities exchange information and help find and bring medicines from abroad, though the process was expensive and time-consuming.

What has been the biggest challenge in getting the medicine you needed?

The biggest challenges are the high cost of the medication and the bureaucratic hurdles involved in importing a medicament that is not registered in Russia.

What would you like to say to other patients and caretakers in a similar situation?

We lost a lot of valuable time during the diagnostic process. Our advice is to prioritize molecular genetic studies as early as possible to identify potential treatment options sooner.

Do you have a message you’d like to share with the family of the patient who donated the medicine to you?

We are deeply sorry for your loss and we understand your feelings all too well. Thank you for giving us a small but meaningful chance. If we don’t get the opportunity to use this medication, we will donate it just as you did. Thank you again from the bottom of our hearts.

If you or a loved one are in need of treatments that aren’t available in your country, don’t hesitate to reach out to Everyone.org. 

We are here to help, whether it’s with accessing medicines or connecting with others who might be able to help. Together, we can ensure that lifesaving treatments don’t get lost, and more patients receive the care they deserve.

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