AIP, HCP, VP Access to Care Toolkit

 

Instructions:

This downloadable Access to Care Toolkit is a resource designed to help patients living with an Acute Porphyria 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 Porphyrias and we hope these resources will help you secure access to Panhematin when you need it most.

 

The toolkit contains the following materials:

 

Healthcare Conversation Tracker: Use this simple form to record your experiences and conversations with your doctors, nurses, insurance providers or administrative staff at the hospital. This will give you a clear record of what happened and support your access to care claims. 

 

Customizable letters templates: Download the customizable letter template that pertains to you (as a patient, caregiver, or healthcare provider) and insert your personal details. You can send the letter to various stakeholders including:

  • Hospital administrator at the hospital that discontinued treatment
  • Local Ombudsman (a person that investigates and helps settle complaints)
  • Local and/or State Representatives (e.g., Congressman, Senators)
  • State Department of Public Health
  • Insurance 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.

 

AIP, HCP, VP Access to Care Fact Sheet: This fact sheet defines Acute Porphyrias, its symptoms and why it’s important for patients to get immediate access to approved treatments when necessary. Include this with your letter as an informational supplement for your recipient.

 

Patient Bill of Rights: Some states have a Patient Bill of Rights that can be used to support your appeal for access to treatment. Included in this toolkit is the Florida Patient Bill of Rights but they can also be found in MN, NJ, NC, and NY. If you don’t know whether your state has a Patient Bill of Rights or where to find it, call and ask your state or local public health office.

 

We hope this toolkit will help you to receive the treatment that you need and deserve.

 

If you have questions, please contact the American Porphyria Foundation at (713) 266-9617 or porphyrus@porphyriafoundation.com.  

 

How to: Share your story online

 

We encourage you to share your personal journey of living with a rare disease with other patients, healthcare providers, advocacy groups, and caregivers. Posting your experiences online and sharing them via social media platforms are wonderful ways to help educate and inspire others who may be living with acute intermittent porphyria or a similar condition. Below are a few tips for sharing:

 

Step 1: Write your story

Start by writing your story. It doesn’t have to be long – 250 words or less – and should capture the key elements of your journey, including:

  • An overview about how your condition was diagnosed
  • A description of how your healthcare team determined the best treatment plan for you
  • A personal example of how your support system and/or caregiver network helps you manage your journey

 

Step 2: Publish your story

Once your story is written there are several options for posting it online:

  • Share as an entry to your personal blog (if you have one)
  • Submit your story to an advocacy organization, such as the American Porphyria Foundation, for publication consideration
  • Send your story to a news outlet, such as a local newspaper, TV/radio station, online news organization (e.g., the Huffington Post) or a condition-specific publication. Contact information for these outlets can usually be found by looking for the “Contact Us” or “Submit a Story” page on their website

 

Step 3: Share your story on social media

After your story is published online it’s important to maximize its potential reach by leveraging social media channels such as Facebook and Twitter. You can also request distribution through the news outlet’s social platforms as well as by asking your friends and family to share. The following sample posts may help inspire your social share:

  • Ever since being diagnosed with acute intermittent porphyria my life has changed. Read more about my battle [insert link to story]
  • Writing my story with acute intermittent porphyria was a difficult but therapeutic task. Learn more about my story here [insert link to story]
  • No one is alone in their battle with acute intermittent porphyria. Here’s my story [insert link to story]

It’s also important to keep in mind some of the following rules and best practices when sharing your story on social media:

  • Consider including a picture of yourself in the post
  • Always include a link to your story
    • Shorten links with bit.ly to conserve characters
  • Tweets are limited to 140 characters, and links account for a maximum of 23 of these characters
  • There is no character limit for Facebook posts, but consider keeping your post to 150 characters or fewer

 

Thank you for sharing your story online. Your story is meaningful and inspiring to the community.

 

Note: The above tips provide only a sample of suggestions to the writer for sharing his/her own experience. It is the writer’s responsibility to detail his/her own thoughts and experiences in a personally acceptable manner. All distributed content is ultimately the responsibility of the writer.

 

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 [Insert Acute type Here: AP, HCP, or VP] 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 [Insert type of Acute Porphyria here: AIP, HCP, VP] 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 [Insert type of Acute Porphyria here: AIPHCP, VP]  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 [Insert type of Acute Porphyria here: AIPHCP, VP]​ 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 [Insert type of Acute Porphyria here: AIPHCP, VP] 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 [Insert type of Acute Porphyria here: AIPHCP, VP]​ 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 [Insert type of Acute Porphyria here: AIPHCP, VP]​ 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]

 

 

 

 

Patient Bill of Rights Example (Florida)