Monday, March 27, 2017

Access to Care Toolkit for the Acute Porphyrias is now available Part 1

What's all in the New Acute Porphyria Tool Kit?  (AHP)

How can it benefit me or a caregiver?  How will it affect my Doctor's appointments?

All these tools come free of charge and can be downloaded any time.  

Please click on the link here: Access to Care Toolkit:  

Access to Care Toolkit for the Acute Porphyrias is now available

A downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility.  We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider.  If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representatives and health advocacy organizations.  We understand the debilitating effects of acute porphyria and hope these resources will help you secure access to Panhematin when you need it most.

The Toolkit contains the following materials:
*Healthcare Conversation Tracker is a simple form to record your conversations with doctors, insurance agents, etc.
*Customizable letter templates to record your details to use for doctors, state departments, insurance, etc.
*Access to Care Fact Sheet defines AIP, its symptoms and why it's important for patients to get immediate care
*Patient Bill of Rights can be used to support your appeal for access to treatment

This Toolkit can be found on the APF website.  Contact the APF office today if you have questions!
Part 1~

Sample Letter from Patient
Note: The letter provided is only a sample providing suggestions to the writer for composing his/her own letter. It is the writer’s responsibility to detail his/her own thoughts and experiences in a personally acceptable manner. All content is ultimately the responsibility of the writer.

Dear [insert name],

I am a resident of [insert city or town] who lives with a serious medical condition known as Acute Intermittent Porphyria (AIP). AIP is a rare disease that is debilitating, painful and has profoundly impacted my life. I struggled for years to obtain a diagnosis. However, with my diagnosis, I was finally able to manage my disease with Panhematin, which I received at [insert name of hospital.]

I was devastated to learn that [insert name of hospital] will no longer honor my physician’s prescription and provide me with access to this treatment. Instead, I was told to find it through another hospital.

As a patient living with a rare disease, it is important I continue to receive timely access to the most effective treatment available. During an attack, I experience excruciating pain and [insert specific symptoms], that make it extremely difficult to find another hospital, much less get myself there.

Living with AIP is extremely challenging and recurrent, severe attacks have limited my ability to work and provide for myself and my family. It is extremely important that I have access to Panhematin at my preferred hospital. I worry that delays in treatment will result in a serious attack leading to hospitalization, and serious, potentially life-threatening complications.

I appeal to you to help me in urging [name of hospital] to provide continued access to the treatment I desperately need.

This is in keeping with my rights as a patient and in accordance with [insert name of state] Patient’s Bill of Rights and Responsibilities, which state:
  •  [insert exact language from bill of rights]
  • [insert exact language from bill of rights]

I appreciate your thoughtful consideration of my appeal and look forward to hearing from you soon.

Sincerely,

[Insert your name]




Sample Letter from Caregiver
Note: The letter provided is only a sample providing suggestions to the writer for composing his/her own letter. It is the writer’s responsibility to detail his/her own thoughts and experiences in a personally acceptable manner. All content is ultimately the responsibility of the writer.
                                                                     
Dear [name],

Imagine you, or a loved one, suffered from a potentially life-threatening rare disease only to have the hospital you know and trust deny access to the only treatment that helps.

Unfortunately, this is not a hypothetical story. This is my reality. I am a resident of [insert city or town] and I provide care to a person living with Acute Intermittent Porphyria (AIP), a rare, often debilitating and painful disease, that can lead to hospitalization if untreated.  He/she] has been receiving Panhematin, the only FDA approved hospital-based treatment for AIP for [insert number] years.

We were recently devastated to learn that [name of hospital] will no longer provide access to Panhematin. In fact, the [insert title of person you spoke with] turned us away and told us to find another hospital for treatment.

This is extremely troubling and disappointing, because it is critical that AIP patients have prompt, access to treatment. Delays can result in a severe, potentially life-threatening attack. Left untreated, an attack can result in serious complications such as irreversible nerve damage.

As a caregiver, the thought of watching my loved one suffer needlessly when there is a treatment available at their preferred hospital is unacceptable. I appeal to [insert organization/person receiving letter] to reconsider this misguided decision and continue to give patients the treatment they need and deserve in accordance with [insert name of state] Patient’s Bill of Rights and Responsibilities, which state:
  •  [insert exact language from bill of rights]
  • [insert exact language from bill of rights]

I appreciate your thoughtful consideration and look forward to hearing from you soon.

Sincerely,

[Insert your name]





Sample Letter from Healthcare Provider
Note: The letter provided is only a sample providing suggestions to the writer for composing his/her own letter. It is the writer’s responsibility to detail his/her own thoughts and experiences in a personally acceptable manner. All content is ultimately the responsibility of the writer.

Dear [insert name],

As the treating physician for a patient living with Acute Intermittent Porphyria (AIP), a rare disorder that often leads to extreme pain and debilitating symptoms, I was disappointed to learn that [name of hospital] will no longer provide [him/her] access to Panhematin, the only FDA-approved, hospital-based treatment for AIP attacks.

This is extremely troubling and I appeal to [insert organization/person receiving letter] to help ensure [name of hospital] provides continued access to this critical treatment in the interest of my patient’s health, and in keeping with [his/her] rights as a patient. Patients with AIP require prompt, unrestricted access to Panhematin that is prescribed under the care of physicians experienced in the management of porphyria, at hospitals that offer the necessary clinical and laboratory diagnostic and monitoring techniques. Delays in treatment can result in severe, potentially life-threatening attacks. Left untreated, attacks can lead to hospitalization, irreversible nerve damage and possibly death.

As healthcare providers to the community, [name of hospital] has an obligation to provide timely treatment to patients. Patients with AIP often experience excruciating pain, which greatly reduces their ability to manage changes in treatment schedules and locations. Turning my patient away from this facility is more than an inconvenience and could cause long-term health issues.

I appreciate your thoughtful consideration of my appeal and look forward to your reply.

Sincerely,

[Insert name]
[Insert title]





No comments:

Post a Comment

Health & Happiness!

Happiness & health Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to sh...