Statement of Principles concerning sickle-cell disorder (Balance of Probabilities) (No. 41 of 2017)

The central concept is “sickle-cell disorder”, defined in subsection 7(2) as a genetic disorder leading to the production of haemoglobin S. It includes three subtypes: sickle-cell disease (HbSS, two copies of the HbS gene), sickle-cell trait (HbSA, one copy), and double heterozygous sickling disorders (one copy of HbS plus another beta-globin gene variant). The definition explicitly notes that the disorder may be diagnosed in asymptomatic individuals through genetic testing. This means a person with sickle-cell trait, who may never experience symptoms, is still covered. However, because the factors all relate to “clinical worsening”, a claimant with trait must still demonstrate permanent worsening to trigger compensation. “Clinical worsening” is defined in the Dictionary as permanent worsening of sickle-cell disorder evidenced by either a sickle-cell crisis (or series of crises) resulting in end-organ damage or death, or an increase in the requirement for management of manifestations or complications. Notably, the definition requires “permanent” worsening: a transient crisis that resolves without lasting damage or increased ongoing management does not qualify. This is a high threshold. “Sickle-cell crisis” is defined as a vaso-occlusive, anaemic, or infectious complication requiring hospitalisation or management by a medical practitioner. So a crisis must be severe enough to involve a medical practitioner. The concept of “relevant service” is limited: eligible war service (other than operational service), defence service (other than hazardous service and British nuclear test defence service) under the VEA, and peacetime service under the MRCA. This excludes operational service, hazardous service, and British nuclear test defence service. The instrument applies only to claims on the balance of probabilities standard, not the reasonable hypothesis standard. The factors are divided into two lists: Specified List 1 (within 24 hours) and Specified List 2 (within 7 days). List 1 includes altitudes above 1,500 metres (including flying), dehydration, sleep apnoea or other causes of hypoxia, and strenuous exercise. List 2 includes change in ambient temperature resulting in skin cooling, fever, granulocyte colony-stimulating factors, immersion in cold water, infection, iodinated radiological contrast agents, pregnancy or puerperal period, scuba diving, and surgery. Both lists are exhaustive. There is also a factor for smoking (at least one pack-year before clinical worsening and cessation within 6 months of worsening), second-hand smoke (1,000 hours exposure before worsening and last exposure within 6 months), corticosteroids (other than inhaled or topical, within 30 days), and inability to obtain appropriate clinical management. The concept of “inability to obtain appropriate clinical management” is not further defined: it could refer to lack of access to medical care during service, but the claimant must show that this inability caused the clinical worsening. Section 10 confirms that the factors apply only to material contribution or aggravation of a disorder that existed before or during (but did not arise out of) service. This reinforces that the genetic condition must have existed prior to the claimed aggravation event. The dictionary also defines “terminal event” for death claims, listing pneumonia, respiratory failure, cardiac arrest, circulatory failure, or cessation of brain function. Death must be contributed to by the sickle-cell disorder.

The primary affected population is veterans of the Australian Defence Force who have rendered relevant service as defined: eligible war service (non-operational), defence service (non-hazardous and non-British nuclear test), and peacetime service under the MRCA. These are individuals who have a diagnosis of sickle-cell disorder (including trait) and who claim that their service aggravated or materially contributed to the worsening of that disorder. The instrument also affects members of the Forces under the MRCA (peacetime service). It does not apply to veterans with operational service, hazardous service, or British nuclear test defence service; those claims are governed by a separate Reasonable Hypothesis SoP (the companion instrument, likely No. 40 of 2017). Claimants’ legal representatives and advocates must become familiar with the precise definitions and temporal windows. The Repatriation Medical Authority (RMA) is affected as the maker of the instrument and the body that determines the “sound medical-scientific evidence”. Decision-makers in the Department of Veterans’ Affairs and the Military Rehabilitation and Compensation Commission are bound to apply this instrument when assessing claims. The instrument also affects medical practitioners who may be asked to provide evidence of clinical worsening, crises, and end-organ damage. The requirement that a crisis be “requiring hospitalisation or management by a medical practitioner” means that self-managed crises at home without medical input likely do not count. This imposes a documentation burden on veterans to seek medical attention for every crisis, even if they could manage it themselves. The definition of “clinical worsening” that requires permanent worsening and end-organ damage means that veterans with only functional impairment from sickle-cell crises without end-organ damage may not qualify. This affects those with milder forms of sickle-cell disorder (e.g., HbSC disease or sickle-cell trait) who may have infrequent crises. The smoking and second-hand smoke factors affect veterans who smoked or were exposed to smoke during service. The requirement that the clinical worsening occur within six months of cessation for the smoking factor creates an incentive to quit smoking and claim promptly, but also penalises those who quit more than six months before worsening. The second-hand smoke factor requires 1,000 hours of exposure in an enclosed space; this is a high bar that may disproportionately affect veterans who served in non-enclosed environments or who cannot prove the extent of exposure decades later. The corticosteroid factor affects veterans treated with systemic corticosteroids (e.g., prednisolone) within 30 days prior to worsening; those on inhaled or topical steroids are excluded. This may affect those with asthma or inflammatory conditions. The “inability to obtain appropriate clinical management” factor is a safety net for veterans whose service denied them proper care (e.g., in remote postings or during captivity). However, proving inability is difficult and requires evidence of what management was appropriate and unavailable. The instrument also affects families of deceased veterans who claim death from sickle-cell disorder, as they must show that the disorder contributed to a terminal event. Finally, the cross-reference mechanism in section 11 means that if a factor (e.g., infection) refers to another condition covered by a different SoP, then the factors of that SoP must also be satisfied. This can expand the burden on claimants.

The instrument does not impose duties directly on individuals; rather, it defines the evidentiary requirements that a claimant must meet to establish a right to compensation or treatment under the VEA or MRCA. The key duty on the claimant is to prove, on the balance of probabilities, that at least one of the factors in section 9 exists and that the factor is related to the person’s relevant service (section 10). This is a duty of proof, not an obligation to act. The claimant has the right to rely on this instrument as the authoritative statement of what constitutes a connection between sickle-cell disorder and service. If the claimant satisfies the factors, the decision-maker must accept the connection. However, the instrument also imposes a duty on decision-makers to apply the definitions strictly. The definition of “clinical worsening” requires permanent worsening: transient worsening that resolves does not meet the threshold. This means the claimant must document not just a crisis but evidence of end-organ damage or a lasting increase in management requirements. The duty on the medical practitioner providing evidence is to specify the nature of the crisis, the presence of end-organ damage, and whether the worsening is permanent. The claimant also has the right to rely on the factor of “inability to obtain appropriate clinical management”, which is not tied to a specific time window. This factor may be used even if none of the specific stimuli occurred, provided the inability is service-related. However, the instrument does not define “appropriate clinical management”, leaving room for interpretation but also uncertainty. The right to claim under this instrument is limited to the balance of probabilities standard. For operational service claims, the claimant would need to use the companion Reasonable Hypothesis SoP, which has a lower threshold. The instrument also gives the RMA the right (and duty) to determine the SoP based on sound medical-scientific evidence. The instrument does not create any new rights beyond what the VEA and MRCA already provide; it merely specifies the pathway. A notable feature is that the instrument applies only to material contribution or aggravation, not to initial causation (section 10(2)). This is because sickle-cell disorder is genetic and cannot be caused by service. Claimants must therefore prove that the disorder existed before or during service (but did not arise out of service) and that service worsened it. This places a burden on the claimant to establish the baseline severity of the disorder before the claimed aggravation event. The instrument also gives the claimant the right to rely on alternative factor pathways: the factors in subsections 9(1) to 9(6) are alternatives, so only one needs to be satisfied. However, if the factor refers to another SoP (section 11), the claimant must also meet the factors of that SoP. This cross-reference can add a secondary layer of duties.

This instrument does not itself impose penalties. It is an evidentiary instrument that determines whether a veteran’s claim succeeds or fails. Enforcement, if that term is appropriate, is through the normal claims process: if a claimant fails to satisfy the factors, the claim is rejected. There is no criminal penalty for failing to comply because there is no obligation on veterans to act in any particular way. The instrument does not create offences. However, there are indirect consequences. If a claimant knowingly provides false evidence that a factor existed (e.g., claiming a stimulus that did not occur), they may be subject to general criminal provisions relating to fraud against the Commonwealth, such as under the Criminal Code 1995. The VEA also contains provisions regarding false statements and penalties. But the SoP itself is silent on penalties. The only enforcement mechanism is administrative: the Department will assess the claim against the SoP and may require substantiation. If the claim is rejected, the claimant can seek review by the Veterans’ Review Board or the Administrative Appeals Tribunal, and ultimately judicial review. The instrument gives the RMA authority to revoke and replace SoPs, but that is not a penalty. The instrument does not contain any provision for fines, imprisonment, or civil pecuniary penalties. The practical “penalty” for a claimant is the denial of compensation or treatment. This could be economically significant: a veteran with sickle-cell disorder may be denied disability pension or medical treatment for complications. The instrument’s high threshold for clinical worsening (permanent worsening with end-organ damage) may effectively penalise those with milder but still significant impairment by excluding them. The smoking and second-hand smoke factors require proof of quantity (pack-years, 1000 hours). If records are inadequate, the claim will fail. In that sense, poor record-keeping by the military or the veteran acts as a de facto penalty. The enforcement of the SoP in practice depends on the quality of decision-making and the availability of medical evidence. There is no enforcement body tasked with policing the SoP; it is simply applied by claims assessors. The RMA does not enforce compliance; it merely determines the content of the SoP. The instrument gives no rights to third parties to enforce anything. In summary, penalties are not part of this instrument; the only adverse consequence is the loss of a potential benefit.

This instrument is made under subsection 196B(3) of the Veterans’ Entitlements Act 1986 and also applies to claims under section 339 of the Military Rehabilitation and Compensation Act 2004. It therefore operates within the broader legislative framework of veterans’ entitlements. It revokes the earlier SoP No. 44 of 2008, so any claims pending at the date of commencement (31 July 2017) that were not finally determined would be assessed under the new instrument. The instrument does not apply to operational service under the VEA; claims for operational service are governed by a separate SoP made under subsection 196B(2), which uses a reasonable hypothesis standard. Similarly, it does not apply to hazardous service or British nuclear test defence service. This creates a two-track system: the same condition may be treated differently depending on the type of service. The instrument also interacts with other SoPs through section 11. If a factor in section 9 of this instrument refers to an injury or disease that is itself covered by another SoP (e.g., “infection” is a factor, and infection may be a disease for which a SoP exists), then the factors of that other SoP also apply. This can create a chain of requirements. For example, if a veteran claims that an infection (a factor in List 2) led to clinical worsening, and that infection is also claimed as a separate condition, the veteran may need to satisfy the SoP for that infection as well. This cross-reference prevents double counting but can complicate claims. The instrument defines its own terms, but some terms (e.g., “relevant service”) are drawn from the VEA and MRCA. It also incorporates the ICD-10-AM code D57 for classification purposes, but the actual definition of sickle-cell disorder in subsection 7(2) overrides the code. This means that the ICD-10-AM code is only a guide; the legal meaning is broader. The instrument also interacts with general administrative law principles. The Repatriation Medical Authority must base its determinations on “sound medical-scientific evidence” (section 8). This is a statutory standard that imports a requirement of evidentiary justification. If a party challenges the instrument, they could argue that the authority ignored relevant evidence or acted unreasonably. However, the source does not provide any indication of such challenges. The instrument also interacts with the limitation periods and procedural rules under the VEA and MRCA for lodging claims. It does not alter those rules. Finally, because the instrument is a legislative instrument, it is subject to disallowance by either House of Parliament under the Legislation Act 2003. This provides a political check on the RMA’s determinations. The interaction with state laws is minimal: veterans’ entitlements are a Commonwealth matter, and the SoP does not affect state workers’ compensation or health laws.

The source states that this instrument, No. 41 of 2017, was made on 30 June 2017 and commences on 31 July 2017. It revokes the earlier “Statement of Principles concerning sickle-cell disorder No. 44 of 2008 made under subsection 196B(3) of the VEA.” The source does not provide any details of amendments between 2008 and 2017, or any earlier versions. The revocation is express: the 2008 SoP is replaced. The instrument also notes in section 5 that it applies to claims to which section 120B VEA or section 339 MRCA applies. There is no indication that this instrument itself has been amended since 2017; nor can we assume it has been, as the source does not mention any amendments. The RMA may issue amending instruments, but none are referenced. The instrument contains no transitional provisions beyond the application clause. It is likely that the 2008 SoP was the first SoP for sickle-cell disorder under the balance of probabilities standard, and No. 41 of 2017 represents an update based on newer medical evidence. The instrument’s structure is standard for RMA SoPs: factors, definitions, and notes. There is no indication of any amendment by the Federal Court or Parliament. The instrument itself notes that it is made under subsection 196B(3), which is the balance of probabilities track. There is a companion reasonable hypothesis SoP (likely No. 40 of 2017) but that is not part of this instrument. The amendment history is sparse; the only known event is the revocation of the 2008 instrument. The source does not explain why the 2008 instrument was revoked. However, given the RMA’s practice, the likely reason is that new sound medical-scientific evidence emerged, leading to changes in the factor lists or definitions. This instrument adds factors that were not present in the 2008 version? We cannot assert that without seeing the 2008 version. The only thing we can say is that the 2017 instrument supersedes the 2008 one. The instrument also updates the ICD-10-AM reference to the Ninth Edition (2015). The 2008 version may have used an older edition. The instrument also defines “clinical worsening” more precisely than the 2008 version? Unknown. The bottom line: the only amendment history available from the source is the revocation of the antecedent instrument. We must not invent any other changes.

The source does not mention any litigation, cases, or tribunal decisions. It is a legislative instrument, and as such it is not itself litigated but is applied in administrative decisions. There may have been challenges to the 2008 SoP or the 2017 SoP in the Veterans’ Review Board, Administrative Appeals Tribunal, or Federal Court, but no such cases are referenced in the instrument. Because we cannot rely on external knowledge, we must state that the source provides no litigation history. In practice, SoPs are frequently the subject of appeals, particularly regarding the meaning of “clinical worsening” or the sufficiency of evidence for a factor. For example, the meaning of “inability to obtain appropriate clinical management” has been considered in cases under other SoPs. However, we cannot assume that for this specific SoP. The instrument contains no reference to any court or tribunal decisions. The only reference to the legal system is the cross-reference to the VEA and MRCA. Therefore, any litigation history would have to be inferred from general knowledge, which the instructions forbid. We will state that the source is silent on litigation, meaning no specific judicial interpretations of this instrument are provided. This is a significant gap for the reader: they need to know whether any court has interpreted “permanent worsening” or “end-organ damage” in this context. Without source-grounded information, we cannot fill that gap. The closest thing to a legal challenge would be if a claimant argued that the RMA did not base the instrument on sound medical-scientific evidence. But that would be a challenge to the validity of the instrument, not a case under it. Since no such challenge is mentioned, we cannot discuss it. The absence of litigation history may indicate that the instrument is relatively uncontroversial, or that disputes are resolved at the administrative level without reported decisions. For the deep dive, we must simply note: no litigation history is contained in the source. This may be a useful reminder to practitioners to search for relevant AAT or Federal Court decisions separately. We can also note that the instrument’s predecessor (No. 44 of 2008) may have generated cases, but the source does not mention them.

Several features of this instrument are potential traps for claimants and their representatives. First, the definition of “clinical worsening” requires permanent worsening evidenced by end-organ damage or death, or an increase in management requirements. A single sickle-cell crisis that resolves without lasting damage does not qualify, even if it required hospitalisation. The crisis itself is defined as a complication requiring hospitalisation or management by a medical practitioner, but the clinical worsening requires more: it must be permanent. This means a veteran who has recurrent crises but recovers fully each time may not satisfy the definition. The only way to show permanent worsening is to prove that the crises resulted in end-organ damage (e.g., renal impairment, stroke, pulmonary hypertension) or that the veteran now requires more frequent or intensive management (e.g., chronic transfusions). This is a high bar and requires careful documentation. Second, the temporal windows are strict. For Specified List 1 stimuli, the stimulus must occur within 24 hours before the clinical worsening. For List 2, within 7 days. For smoking, cessation must be within 6 months of worsening. For second-hand smoke, last exposure within 6 months. These windows are short. If a veteran experiences a crisis two weeks after a surgery, the surgery factor (List 2, 7 days) would not apply unless the crisis occurred within 7 days. Claimants must precisely date the clinical worsening event. Third, the definition of “sickle-cell disorder” includes sickle-cell trait, which is usually asymptomatic. A person with trait may still experience clinical worsening under stress. The instrument allows claims for trait, but the factors are designed around typical triggers for crisis. A veteran with trait may find it hard to show that a worsening was permanent and attributable to service. Fourth, the factor for “inability to obtain appropriate clinical management” (subsection 9(6)) is a potential trap because it seems like a safety net, but it places a heavy burden on the claimant to prove that appropriate management was unavailable and that this inability caused permanent worsening. What constitutes “appropriate clinical management” is not defined. Claimants may mistakenly think that any delay in treatment counts, but the instrument likely requires evidence that a specific management option (e.g., hydroxyurea, blood transfusions, avoiding triggers) was not provided due to service circumstances. Fifth, the second-hand smoke factor requires exposure to second-hand smoke in an enclosed space for at least 1,000 hours before clinical worsening. 1,000 hours is equivalent to about 42 days of continuous exposure (24/7) or about 4 hours per day for 250 days. Proving this in a service context (e.g., in a mess hall or barracks) may be difficult decades later. The exposure must also be to smoke that is inhaled; simply being in a smoky environment is not enough; the definition requires being in an enclosed space and inhaling smoke. This excludes outdoor exposure. Sixth, the smoking factor requires a pack-year calculation. A pack-year is defined as 20 tailor-made cigarettes per day for a year, or 7.3 kg of smoking tobacco. The definition says “one pack-year of cigarettes equals 20 tailor-made cigarettes per day for a period of one calendar year, or 7300 cigarettes.” It then says “one pack-year of tailor-made cigarettes equates to 7.3 kilograms of smoking tobacco by weight.” This means that a veteran who smoked roll-your-own cigarettes must convert to grams. The instrument says “one tailor-made cigarette approximates one gram of tobacco or one gram of cigar or pipe tobacco by weight.” So 7.3 kg is the equivalent. If a veteran smoked a pipe or cigars, they must calculate equivalent weight. The six-month cessation window means that if clinical worsening occurred more than six months after quitting, the factor cannot be used even if smoking during service contributed. Seventh, the corticosteroid factor excludes inhaled and topical corticosteroids. Many veterans with asthma use inhaled corticosteroids, and this factor will not apply. Only systemic corticosteroids taken within 30 days before worsening count. Eighth, the factor lists are exhaustive. If a veteran’s worsening was triggered by a non-listed stimulus (e.g., emotional stress, alcohol consumption), that factor does not exist. The RMA has determined that only those listed stimuli are accepted based on the available evidence. Claimants cannot argue that other stimuli should be considered. Ninth, section 10(2) states that the factors apply only to material contribution or aggravation where the disorder existed before or during service but did not arise out of service. This means that if the veteran first developed sickle-cell disorder as a result of service (which is impossible genetically), the claim would fail. But also, if the disorder arose out of service (e.g., a genetic mutation caused by radiation? - extremely unlikely), the factor would not apply. In practice, this limits claims to aggravation only. Tenth, the cross-reference under section 11 means that if a factor refers to another condition (e.g., infection), the factors of the SoP for that infection may also need to be satisfied. This can multiply the evidentiary burdens. Finally, the instrument applies only to “relevant service” which excludes operational service. A claimant who has both operational and non-operational service needs to identify which period the factor relates to and use the correct SoP. Using the wrong standard can lead to rejection.

For a claimant to succeed under this instrument, the following steps must be taken. First, establish that the veteran has a diagnosis of sickle-cell disorder as defined, including genetic testing if asymptomatic. Obtain medical evidence confirming the subtype (HbSS, HbSA, or double heterozygous). Second, identify an episode of clinical worsening as defined: permanent worsening evidenced by end-organ damage (e.g., stroke, acute chest syndrome with pulmonary hypertension, renal failure, avascular necrosis) or an increase in the requirement for management of the disorder. This requires detailed medical records showing that the crisis led to a lasting change. A single crisis without residual damage is insufficient. The worsening must be clearly dated and linked to service. Third, determine which factor(s) from section 9 apply. For each candidate factor, collect evidence that the stimulus occurred, the time window, and the relationship to service. For example, if the factor is “dehydration” from Specified List 1, obtain evidence that the veteran experienced dehydration (e.g., in training, in a hot climate) within 24 hours before the clinical worsening. If the factor is “infection” from Specified List 2, obtain evidence of a diagnosed infection within 7 days before worsening. If smoking, calculate pack-years and show that the clinical worsening occurred within 6 months of cessation. For second-hand smoke, compile records of exposure in enclosed spaces (e.g., ship compartments, barracks) totalling at least 1,000 hours before worsening, and that last exposure was within 6 months. This may require affidavits from fellow service members and historical records of smoking policies. For corticosteroids, obtain prescription records showing systemic corticosteroids within 30 days before worsening. For inability to obtain appropriate clinical management, gather evidence that appropriate management was not available due to service conditions (e.g., lack of access to a specialist or to hydroxyurea while deployed) and that this inability led to permanent worsening. Fourth, establish that the factor is related to the veteran’s relevant service (section 10). This means the dehydration, infection, smoking etc. must have occurred during or because of service. For example, the dehydration must have been caused by service activities; smoking must have been during service; inability to obtain management must have been due to service posting. The factor does not need to be unique to service; it just needs to be related. Fifth, prepare a statement of principles pathway: list the factor(s), provide the medical evidence of clinical worsening, and explain how the time windows and definitions are satisfied. Sixth, if a factor refers to another injury or disease (e.g., infection, surgery), check whether that condition has its own SoP and ensure those factors are also satisfied. Seventh, ensure the claim is made under the correct Act (VEA or MRCA) and that the service is “relevant service” as defined. If the veteran has operational service, use the reasonable hypothesis SoP instead. Eighth, lodge the claim with supporting documents. It may be advisable to seek assistance from a veterans’ advocate or lawyer familiar with SoPs. Ninth, be prepared to challenge adverse decisions at the Veterans’ Review Board or AAT, particularly if the decision-maker misapplies the definition of “clinical worsening” or “permanent worsening”. For decision-makers (Department staff), compliance means applying the instrument strictly: check the diagnosis, check for evidence of clinical worsening (permanent, with end-organ damage or increased management), check that at least one factor is satisfied and is related to service, and check the definitions. Do not accept a mere assertion of a crisis without evidence of permanence. Ensure that the time windows are respected. For the RMA, compliance involves reviewing the instrument periodically to ensure it reflects sound medical-scientific evidence. In practice, the instrument places significant evidentiary burdens on claimants, particularly regarding permanence and temporal windows. Claims are likely to succeed only if there is robust contemporaneous medical documentation and a clear record of service events.