Page 10 - HFA Dateline 2014 Q3 Fall
P. 10
Lori Long lives in the Southwest
JANIE and JOE: The Sequel continued… and has Hemophilia B. She is
also raising a son (age 10) with
Soon after this incident, I asked the social worker to help me connect with other parents Hemophilia B. She is passionate
who had children with inhibitors so that I could find more support and information. Despite about building community and
expressing my isolation, the social worker told me that it was against HIPAA regulations believes strongly in community
to send me even the diagnosis of a patient, let alone their contact information. The thing is, strength making a difference
she had already done this several times in the previous year, providing me with the names, in the world (even if it’s just her
email addresses, diagnoses, and even home addresses of other families prior to my com- little corner of it). Her interest
in serving rural communities
plaint. Turning to her supervisor, the nurse, I was again met with a cold response, and told stems from the number of blood
that this was against the HTC’s policy. Furthermore, the nurse remained cold toward me as brothers and sisters she has in
she explained that I had the option to use an alternate HTC. her area who live without phone,
Internet, and even water service.
Over the four years since this happened, this social worker has done everything in her power Her interest in serving in gener-
to limit me socially. She has reduced my access to monthly cab vouchers down to twice a al is inspired by her father, who
year and has refused to speak to me at social functions. What’s more, the social worker al- died at the age of 68 from a head
ways seems to have an excuse for avoiding us when Joe and I are in the HTC. She will reply bleed due to a lack of access to
curtly and professionally to my emails, however, but will not include me on the group mes- factor.
sages in which I was previously included. All of her messages now come addressed both to Catie Cheshire, the daughter of
me and her professional peers. All of this makes me feel that she is doing only the minimum an obligate carrier, became in-
to get the job done. That is, her horrific behavior is what passes for appropriate in an HTC. terested in bleeding disorders
It’s truly upsetting, as I feel that I’ve got no further recourse. through her cousin who has
Hemophilia B. Catie hopes to
I hope that sharing my own lack of access can, in some small way, better our community. advance awareness among
Please share yours as well, and we can effect change together. n n today’s younger generation by
becoming engaged in the bleed-
ing disorders community and
sharing information.
10 Dateline Federation | Fall 2014
JANIE and JOE: The Sequel continued… and has Hemophilia B. She is
also raising a son (age 10) with
Soon after this incident, I asked the social worker to help me connect with other parents Hemophilia B. She is passionate
who had children with inhibitors so that I could find more support and information. Despite about building community and
expressing my isolation, the social worker told me that it was against HIPAA regulations believes strongly in community
to send me even the diagnosis of a patient, let alone their contact information. The thing is, strength making a difference
she had already done this several times in the previous year, providing me with the names, in the world (even if it’s just her
email addresses, diagnoses, and even home addresses of other families prior to my com- little corner of it). Her interest
in serving rural communities
plaint. Turning to her supervisor, the nurse, I was again met with a cold response, and told stems from the number of blood
that this was against the HTC’s policy. Furthermore, the nurse remained cold toward me as brothers and sisters she has in
she explained that I had the option to use an alternate HTC. her area who live without phone,
Internet, and even water service.
Over the four years since this happened, this social worker has done everything in her power Her interest in serving in gener-
to limit me socially. She has reduced my access to monthly cab vouchers down to twice a al is inspired by her father, who
year and has refused to speak to me at social functions. What’s more, the social worker al- died at the age of 68 from a head
ways seems to have an excuse for avoiding us when Joe and I are in the HTC. She will reply bleed due to a lack of access to
curtly and professionally to my emails, however, but will not include me on the group mes- factor.
sages in which I was previously included. All of her messages now come addressed both to Catie Cheshire, the daughter of
me and her professional peers. All of this makes me feel that she is doing only the minimum an obligate carrier, became in-
to get the job done. That is, her horrific behavior is what passes for appropriate in an HTC. terested in bleeding disorders
It’s truly upsetting, as I feel that I’ve got no further recourse. through her cousin who has
Hemophilia B. Catie hopes to
I hope that sharing my own lack of access can, in some small way, better our community. advance awareness among
Please share yours as well, and we can effect change together. n n today’s younger generation by
becoming engaged in the bleed-
ing disorders community and
sharing information.
10 Dateline Federation | Fall 2014
